History

Journal History

Thursday, December 4, 2008 11:57 AM CST

Chanda and I welcomed a new addition to our family last week. At 0934 on November 26th, Lucas Dane Courtney arrived weighing in at 7lbs 10ozs. Chanda and baby are doing very well. We are both extremely happy and can not wait to tell young Lucas all about his big brother. We know that Jacob will be watching over the three of us and will occasionally give us little signs to let us know he is there.

Check photo album

Thursday, July 3, 2008 9:44 AM CDT

I have had a recurring dream since Jacob left us. Chanda and I are standing on the side lines of a football field and in front of us is a grown boy in football uniform and he is facing away from us and his jersey has “COURTNEY” on the back. I can remember being so excited and when I would wake up I thought of how my Dad must have felt when I was playing ball. I can see it in my head even when I am awake, it was so real. I had accepted that this dream would never come true and that realization left a hole in my heart.

I am proud to say that Chanda and I are expecting a baby boy who will arrive in November. We are excited and sad because we both know that Jacob would have been a fantastic Big Brother. We will, however, have the pleasure of telling little brother all about Jacob and making sure he knows how great he was. Chanda and I both want to make sure that little brother grows up knowing Jacob from our stories and seeing Jacob in pictures and video.

We are smiling and I know Jake is too.

Thursday, July 3, 2008 9:41 AM CDT

I have had a recurring dream since Jacob left us. Chanda and I are standing on the side lines of a football field and in front of us is a grown boy in football uniform and he is facing away from us and his jersey has “Courtney” on the back. I can remember being so excited and when I would wake up I thought of how my Dad must have felt when I was playing ball. I can see it in my head even when I am awake, it was so real. I had accepted that this dream would never come true and that realization left a hole in my heart.

I am proud to say that Chanda and I are expecting a baby boy who will arrive in November. We are excited and sad because we both know that Jacob would have been a fantastic Big Brother. We will, however, have the pleasure of telling little brother all about Jacob and making sure he knows how great he was. Chanda and I both want to make sure that little brother grows up knowing Jacob from our stories and seeing Jacob in pictures and video.

We are smiling and I know Jake is too.

Tuesday, March 18, 2008

Yes, it is possible to live and breathe with a broken heart after the death of a child. The hard part is wanting to live and breathe.

Our dear friend Harrison lost his battle on 2/17.

I imagine Jake and Harrison in heaven together, sharing TRANSFORMERS for once!

Our hearts go out to the Nichols family, life is truly unfair.

Today Harrison would have turned 9, happy birthday Harrison, I hope you and Jake are eating green cupcakes in heaven.

Friday, February 8, 2008

As Valentines Day approaches, I wanted to post this sweet photo of our little man. Daddy and I bought him this singing kitten for Valentines Day that year and it sang “You are my sunshine”. Jake absolutely loved it because I use to sing that very same song to him all the time, and trust my singing voice ain’t great at all, but he sure loved it. He was the light of our lives, our everything. Our empty arms ache so badly for him every minute…

Jake, if you are reading this, Mommy and Daddy love you bigger than a dinosaur, bigger than the Milky Way, bigger than the universe, infinity…

Hug your children everyday…and tell them how very much you love them, no matter how your day is going, you never know when things can change.

Sending prayers for our friend Harrison, we are thinking of you all.

Wednesday, January 2, 2008

Today our sweet boy would have turned 9 years old. Brian and I still cannot believe he has been gone 4 years.

The holidays are always tough to take; they are not merry or happy for us. We are faced with the anniversary of Jake's passing and a week later Christmas, then a week later his birthday. Pretty painful...

Each day will always be a struggle without him. He loved the holidays and all the festivities so much.

We hope you will remember Jacob today on his 9th birthday, whether you sent a balloon up into the sky or you sang happy birthday to him, we appreciate you remembering him and I know Jake would be thrilled. He touched so many people deeply.

Happy Birthday little man, Daddy and I miss you more and more every single day.

Wednesday, September 12, 2007 5:27 PM CDT

When we are asked “How are you doing?”

Well, that really depends; you see, we are putting one foot in front of the other. We are still struggling to get out of bed each morning to face the day. Yes, I admit that just this year the fog has lifted a bit; we’ve found that we can laugh and not feel guilty about it as often. We can have a good day, if that is considered a “good day”, we like to refer to them as better days...

We don’t expect anyone to understand when we share our hearts on this page, we are just venting in our world of grief. There is not one minute Brian and I don’t think about Jacob Aaron. He was the love of our lives and we miss him terribly. I still feel his little hand on the back of my neck with his little fingers wrapping around my hair. What I would give to have him back, even for a day, a minute….

Another one of our dear friends passed away on Monday from Cancer. Jake’s Grama Brenda lost her battle to lung cancer. She was just diagnosed in November of last year. We will miss her terribly; however we have peace knowing she’s with Jake. Between Brenda and Patty now in heaven with Jake, our hearts have a little more peace...

Until next time, thank you for caring even after all this time.

Thursday, April 12, 2007 1:33 PM CDT

“A heart is unpractical, until it can be made unbreakable”
-The Wizard of Oz

Those words never meant so much until witnessing Jake go through so much unimaginable pain and suffering for such a long period of time.

Watching Jacob draw his very last breath will forever haunt us. We relive that last moment a lot, most of the time over and over in our minds. Could we have done anything different? Should we have chosen one doctor or treatment method over another? These are the many battles we both face everyday.

Time passes, and the world keeps turning for everyone, except us. It’s hard not to be bitter or angry. The pain of losing him is still very real and ever present. The sky is a different color of blue with out Jake here.

Holidays are especially hard. Jake loved Easter; he loved coloring eggs and everything that went along with it. It’s very difficult enjoying or celebrating anything without him.

We are however, trying to focus on something positive. Jake's 4th annual golf tournament will be Wednesday June 13, 2007. It will be held at Regent Park Golf Club in Fort Mill, SC. This tournament will benefit families that struggle financially, while caring for their child when they are sick or in the hospital for a lengthy period. If you or anyone you know would like to come out and golf or you would like to make a donation, simply go to our web site www.swingingforkids.org and register to play for this great cause.

Tuesday, January 2, 2007 6:49 PM CST

Heard the preacher at the service
Declare you'd gone home that day
To meet the Maker and His servants
And take a rest amidst His grace

He said now that you're in heaven
Your trials on earth are through
But I didn't hear him mention
If heaven's good enough for you

He claimed you feel no more sorrow
Since you're free from all life's fears
But can the blessed on God's mountain
Love you more than I down here

I was raised not to question
Promises the Bible makes
But how could the Almighty
Make such a terrible mistake

Did the Lord's illumination
Shine upon you from His throne
When He witnessed my sweet angel
Suffer on the long road home

If there's really no more teardrops
And the streets are paved with gold
Send me down some reassurance
I don't believe what I've been told

If there really is a kingdom
Where you start your life anew
Won't you please somehow convince me
That heaven's good enough for you

Artist/Band: Allison Moorer
Lyrics for Song:
Is Heaven Good Enough For You

Tuesday, January 2, 2007 6:49 PM CST

Wednesday, December 13, 2006 4:27 PM CST

Someone once said losing their loved one was like a having a hole in your heart, that when the wind blew you could feel it go through... grief is just like that and so much more but that's close to how my sorrow feels.

This is such a happy time for many, but not us. I read something today that said it's okay to let the season pass without celebration. Well, the tree is up and that's about it.

Brian and I were discussing how if Jake was here, how the gifts would be flowing over, under the tree. How he would have asked for everything he saw a commercial for. How excited he would be that Santa would be coming.

This year we are buying gifts in Jake's memory for the hospitals toy chest. It cracked me up, because Ms. Susan would just give Jake the run of the chest (what cute kid could she say no to?) Man, he thought that was HIS toy chest.

January 2, 2007 Jacob Aaron would have been 8 years old. My baby would have been in second grade, playing soccer, baseball and in karate.

Can you believe it?

I can't, I still can't believe he's gone.....

Monday, September 25, 2006 8:03 PM CDT

It's been a long time, since I updated here...

It is with a heavy heart that I tell you Jake's "Auntie Pat" has joined him in heaven tonight. Brian and I are completely devastated; our hearts absolutely break for her husband Jeff and for the Price / Carbone / Shembari families. Pat was diagnosed with an AVM only a few short months ago. She was set to undergo the removal of the AVM which was located in her brain on September 8th and never regained consciousness. After complications from brain swelling and several unfortunate surgical set backs we lost her tonight.

Brian and I just cannot believe it, our hearts are breaking right now for her husband "Uncle Jeff" and her family in New Jersey. Life is full of unexpected sucker punches. If you love someone, let them know right now.

We have some peace knowing Jacob Aaron was waiting (impatiently) on his "Auntie Pat", hoping she brought him a "surprise". It gives Brian and me great comfort knowing she is with our baby. Brian and I will miss her terribly. I know I will never have another friend like Pat; she was the very best friend I've ever had. She and her family in New Jersey welcomed me, Jake & Brian into their lives while Jake was treated at Sloan Kettering, re-adjusting their lives and joining our emotional roller coaster all for the love of one little boy named Jacob. I cannot tell you how much we appreciated being able to get out of the "city" (NYC) to seek refuge in Bricktown, NJ. For the love we were shown and the sanity we received, I'm so very grateful. Thank you Patty for being the best friend a girl could ever have. I miss you so much.

Please remember Jeff and Patty's family in your prayers, all of our days ahead without Patty will be extremely broken without her in our lives.

Jeff respectfully requests in lieu of cards or flowers memorials made in memory of Patricia Price to:

GODSTOCK:
PO Box 661
China Grove, NC 28023

Thursday, July 20, 2006 3:25 PM CDT

Jacob loved to swim. We would call him our “little water baby”. Once he would get in the water, it was off to the races. Of course, he couldn’t always get in the water when he wanted because of the access port. But the times that he was not accessed, he was in the water. Now when we go to the pool, it never fails, there will be a family there and their little boy will be jumping in and splashing around. It's good to see a happy family, but it still hurts a little. Jacob would have his arm floats on and jump in to Chanda, climb back out and jump in again. He got the whole love for the water from his mom, you can’t keep her out of the pool either. It would fill my heart with pride every time I would see them together. Whether they were swimming together or walking or anything. I could stare at them for hours and smile. I figure Jacob would be about chest high now. He would probably be playing t-ball and any other sport that could hold his interest. I am sure he would love to play the video games that kids play today. Although his dad would have rather been playing games in the line of Pac-Man or Asteroids. I do believe he would have gotten bored with those.

Life would have been so much easier if we would not have lost Jacob.

I love you Jacob Aaron Courtney.

Dad

Tuesday, May 2, 2006 1:51 PM CDT

To begin, Chanda and I would like to thank everyone who is still checking in on us. We are getting along. We really appreciate the entries that you all are making. Yes, we are still reading them. I have not made an update in a while, for that I apologize. When we read the entries that are still being made, it brightens our day. Sometimes I am at a low point and I can go to the website and read a while and it helps. Some of the stories about Jake I have never heard. Keep them coming.
We found a disposable camera from Toys for Us (that's how Jake would say it), that had some pictures on it. We got them developed and it was pictures that Jacob had taken. You could tell what was important to him, a bunch of pictures of Transformers and his mom. It was a treat to get to see things the way that he did. Small treasures that we will never forget.

Brian

Thursday, January 26, 2006 8:17 AM CST

My dear Jacob,

Mommy is getting a new puppy. She is very excited and I know you would be too. We have decided to name her Pwiget. Why Pwiget? Well, we remember how we would read Winnie the Pooh to you or watch the movie with you and instead of saying Piglet, you would say Pwiget. We have thought of other names but we keep coming back to that. You have probably already seen her. I have a feeling you are with us everyday. I don’t think your cat, Mischief, will think too much of the puppy. But, I am sure he will get along with her, eventually. Just think. You will be able to watch the puppy chasing the cat all around the house. Kinda reminds you of Milo and Otis, doesn’t it? I know they would love to play with you. Maybe they will. Mischief still goes in your room and sleeps at your feet, like he used to. We’ll come home and can’t find him. After we look around a while, we find him curled up on your bed. We hung a Transformer on the Christmas tree this year. But, I guess you already knew that. I think next year we’ll put up a second tree with only Transformers on it. A Transformer Tree. Cool, huh.

I wish you were here.

I love you.

Dad

Friday, December 16, 2005 12:59 AM CST

Jacob,

Mommy and Daddy miss you terribly. We are getting by. Another Christmas is upon us, without you. The holidays do not seem complete since you have been gone. We talk about you every day and think about you every minute. Sometimes I dream about you and I swear I can feel you with me. It is comforting at times and sometimes it angers me because you are no longer here. All I ever wanted was to be a father. I remember the day you were born, it took my breath away. I spent the whole night watching you and making sure you were okay. I was so proud of you. You were the best thing that has ever happened to me.

Merry Christmas little man.

I love you.

Dad

Thursday, October 13, 2005 1:55 PM CDT

Regret.

Regret comes in many forms. The dictionary says: to feel sorry, disappointed, or distressed about. To remember with a feeling of loss or sorrow; mourn.
I am going to tell you a story of regret. Along with regret comes guilt and guilt can be a M.F.. There were times when Jacob was still with us that he would want me to play with him or watch TV with him and instead I would either be too busy or too lazy. He loved to lie in mommy and daddies bed and watch videos. During commercials he would holler at me to come in and watch with him and for whatever reason, I would not. Regret. It is a short word that holds a punch that will knock a grown man to his knees, and it has. “Daddy, let’s go swing!” “Not right now, daddies busy.” To turn down a sweet boy who only wanted to swing. What he must have thought.

So many times I would have to leave him. Whether it was to go to work or drop them off at the airport to fly to New York. I was always leaving or they were. Always saying goodbye and telling Jake that I would see him soon. For weeks all I had was phone calls to hold me over until the next time I would see them, and then say goodbye again. I regret not quitting work and doing what some of the other fathers did, stay with their families. It would have been a struggle financially, so what. I would have had so much more time with Jake, time I will never get back. Time that I would give anything for right now.

I think I have written about this before. Maybe I worded it different or told different stories.

Bottom line is, try to live your life so that you do not have regrets.

Dad

Monday, June 27, 2005 1:47 PM CDT

Stating the obvious, it has been a long time since the last update. Nothing really going on here. A few “holidays” have come and gone. I have a picture that Jake gave me for Fathers Day a few years back. The frame has a recorder on it. Jake says, “There’s a snake in my boot.” He pauses then says, “Happy Fathers Day daddy, I love you very much.” Such a sweet and loving little boy. The picture is the day we got back from Tweetsie Railroad. He had his cowboy hat on, his six shooter in hand, and Thomas the Tank Engine painted on his cheek.

The Jacob Aaron Courtney Golf Pro-Am went really well. Thank you all for coming out. The money raised was for Godstock. They helped us out a lot while Jacob was here. My family came into town as did Chanda’s. What would we do without family?

It is not easy to hold our heads up, but it is possible when we try hard. Some days we don’t feel like trying very hard. If you happen upon us while we are having one of those days, please excuse us.

Jacob is all around us in pictures and in spirit. We both talk to him a lot. We will see something or hear something and we will comment that Jake would have loved to have seen/heard that. Any social gatherings, such as the golf outing, Jake would have been working the room meeting everyone. One of our friends’ daughter makes a point whenever she has balloons to release a few for Jacob. We love that no one is forgetting our son. That may sound bad. How could anyone forget a child that impacted so many lives?

Not possible.

Dad

Friday, March 4, 2005 12:48 AM CST

It has been a while since the last update. I have a lot of feelings, but there does not seem to be any words to express how I feel. Lonely, cheated, distraught, angry. Okay, so there are a few words. We are puttering along through the day to day. Dealing with the awkward moments that always seem to pop up. “Wow. Married for twelve years. How many children do you have?” First, you remind yourself that the things that have happened were in our lives, not theirs. How would anybody know? So you bite your lip and try to let them know without breaking down. “We have one son, he would have been six.” The confusion on there faces tells you that they are embarrassed for asking and no one needs to feel that way. I continue with, “We lost our son to cancer, he fought hard for a long time.” We never want anyone to feel uncomfortable about speaking about or telling stories about Jacob. We love to hear all the different takes people have of our son. Some of the stories may make us cry, but don’t stop. We are crying because we miss him, not because someone is telling the story. We are both proud parents of the toughest kid in the whole world.

If you are listening up there, please take care of our baby.

We miss you Jake.

Friday, January 28, 2005 12:07 AM CST

I have been trying to think of something to put on this page for a few weeks, but the words are not there. I am sad. I feel like everyday is the same and I am just going through the motions. Go to work. Go home. Go to bed. And repeat. There is a giant cloud over me that has sucked out the life. I have nothing to look forward to and I really don’t want anything. I miss Jacobs little hand in mine. The looks he would give me. He would hug me and say, “Oh dad, I love you.” I could tell that even at his age, he really understood what love was and everything it meant. I am fighting back tears right now. It hasn’t helped to cry. I have done it, a lot. I have gotten advice from people and don’t get me wrong, I appreciate it. But, it hasn’t helped. I hate not having Jacob here with me. I am jealous of God. He has my sweet boy and I am left here. Hold your head up, be strong for Jacob. I hear you! It is not that easy. Every smile that I happen to smile is quickly replaced with a blank stare. I don’t want to smile. Why should I force myself to smile, to laugh? Nothing will ever replace the feeling of love that I felt when I was with Jacob. He made me strong. He made me want to get up every morning and tackle the day. I am writing this and I can hear every ones advice, “You should still stay strong for Jacob. He is still with you.” I know! But again, not helping. At times it seems that the whole thing, Jacob being here, was a dream. Other times his pain and suffering is as real as the day is long. Life will never be as it was without Jacob.

Thursday, December 30, 2004 10:23 AM CST

As Jacobs sixth birthday approaches I am with mixed feelings. On one side I am grateful that Jacob is not suffering. On the other, I miss him terribly. As most people are celebrating the holidays, we are trying. One thing I am not sure I have done is thank all the people out there that helped us while Jacob was here. To all the nurses and doctors, thank you for taking such great care of my son. I know that without you Jacob would not have been as comfortable or have lived as long. Some of you helped in other ways. Maybe by being with us to help us walk when we wobbled. Some may not have been here physically, but were praying for us. I have read the entries and the support is enormous. Thank you. I especially enjoy hearing someone refer to themselves as a “Jake Fan”. I thought that Chanda and I were the only ones. To all the parents out there who have more than a picture to look at, grab your child and hug them. Hug them once for you, and if you don’t mind, hug them once for Jacob.

Friday, November 19, 2004 12:53 AM CST

Will I ever see you again? My heart has a hole in it and it makes it tough to live. I miss everything about you. You would get mad at your mommy when she made you get out of the hospital bed and walk. She is the reason that you would heal faster. If you would have just lain there, you would have gotten much worse. We tried to make it fun. Maybe play hockey in the hallway. Or go out there and blow bubbles. You really loved blowing bubbles. I hated having to leave you in the room and eating in the hallway. I know how the smell of food would sometimes make you sick. When you did get sick, you would always say that you were sorry. You didn’t have to say that. Getting sick was not your fault. I told you that one time and you said, “Yeah, it’s that damn chemo.” So grown up for a small boy. I learned so much from you. The pain that you went through is unforgivable. Mommy and Daddy are sorry that you had to go through it. We would have both given our lives so that you would not have to go through what you did. Remember when you would sleep in between mommy and me? You were the cheese in our snuggle sandwich.

I miss our cheese.

Friday, October 29, 2004 9:11 AM CDT

Halloween. One of Jacob and Chanda’s favorite holidays. Since Jacob first arrived right up through his treatments, it did not matter what he felt like, he loved it. One year he was a little clown and Chanda colored his nose with red lipstick. Another year he was a skeleton, no, Spiderman, no. He changed his mind every time they went to the store. That’s okay, variety. Choices. That’s what I’m talking about. Last night Chanda started giggling so I asked what was going on. She told me she was thinking about when Jacob would take a bath he would splash the water and laugh and say “Splashin the water like crazy!” The more he splashed the harder he would laugh. He would be laughing so hard only part of the sentence would come out, “Splashin crazy!” It wasn’t long before the three of us were laughing and the floor was covered in water.

Inside joke: Hey, JohnBouk, what did ya bring me?

Monday, October 18, 2004 2:53 PM CDT

Ten months. In some ways it feels like it has been ten years, in other ways, 10 minutes. The longing to hold my son again consumes most of my days. I know that Chanda feels the same way. We deal with this differently. We both try to keep busy at work and at home. Yet another kick in the sack today. I had the pleasant task of updating my benefits today at work. Deleting something has never hurt so much in my life. A message popped up after I checked the box beside Jacobs name, “are you sure you want to delete?” NO!

Friday, October 1, 2004 7:45 PM CDT

We are going through the worst possible experience that any couple could expect to go through. And to be quite truthful, it sucks. The days pass by, slowly, and the hurt is there constantly. In stores I might hear a child say daddy, my heart stops because the child sounds remotely like Jacob. I miss Jacob saying daddy. I watch dads everyday walking with their sons, who are the age that Jacob would be, holding their hand or carrying them. Jealousy is the first thing that comes to me. Why are some chosen to bear such a weight? Some days I feel Jacob with me. Jacob would tell me he would always be with me, I hope so. Well little buddy, I need you now more than ever. Sweet dreams little man.

Monday- September 13, 2004

I have a few theories, and I am sure some people may not understand. I am not sure that I understand. Some of you may not want to read any further. So, all of you Bible thumpin tree huggers, hold onto your shorts.

Chanda and I have discussed this subject on many occasions. For years we prayed that God take Jacobs pain away. Even asking for Him to give us the pain, ten fold if need be, just let us have our son. Well I think He was listening, but didn’t quite understand what we were shooting for. He did take Jacobs pain away and He did give us great pain, but like I said, not quite what we were looking for. Now let’s move on to the whole Heaven and Hell issue. I think that as a group, we have the destinations mixed up. Yes, my son is in Heaven. There is no doubt there. Guess who is in Hell and where that might be? You guessed it, Hell is right outside your front door and all around you. We are living in Hell. Where else can your child be taken away from you by cancer? Where else can there be continuous death and dismay all around the earth? That’s right folks, right here. We have all the signs of Hell. People killing each other, parents starving and beating there children, hurricanes, fires, mass killings. Do you really think that the “bad” people go to Hell? If that is the case, then HELLO all of you “bad” people.

You do not have to agree or like what I have said, but I bet you will think about it.

Dad

Friday, January 16, 2004

Sunday will be one month since Jake passed. It still does not seem real.

I am still crying and wondering aimelesly through the house. So very painful without him. I cry all the time. Maybe that's good. I never did cry very much during the three years from hell, until toward the end of Jake's life.

I cannot check on anyone else's site, I have cut myself off from the CB world. Way too much pain involved. I can't read the entries, too painful, though very appreciated. I have decided to take care of myself for a while and try and learn to live minute by minute without my little man.

Brian and I are struggling with grief, but we keep Jake alive in conversation and we are trying to learn how to cope without him in our lives. It's very hard putting yourself first after loving a child so much and giving all your hope and faith and energy to his well being.

I don't know when my next update will be. This year will indeed be challenging. Brian and I sure do appreciate all of our friends whom we've met along the way via internet or in the flesh. It's aswesome to me knowing that there are such huge hearted folks in this world that care so much. And just think...if we didn't have Caringbridge...how much more difficult that would be to support, encourage, and grieve with one another.

Thank you Caringbrige & Supporters for allowing so much more love to come into our lives during this most very painful painful time in our lives.

Thank you Jake Fans for everything along the way.
XO

Want to make a difference? Here's a list of folks that helped our family through this hellacious nightmare. All the links are above. And Thank you in advance if you already have donated in Jake's memory.

Donate to Caringbridge

Donate to Godstock

Donate to Corporate Angel Network

Donate to The Ronald McDonald House of NYC

Donate to the NCCS

All the links are above and will make a difference for a family in one way, shape or form..

Monday, January 12, 2004

Hello All~

We are back, and Granny Lu gave us a hell of a scare. She was moved to a regular room after 4 days in intermediate care ( a step sown from icu) and should be transferred to a rehabilatation center who knows when, depending on how stable she remains. It seems she stopped taking her medicines and thats when things went down hill. She says she's rebelling. Now I know I come by it honestly. I love her so much, we all do. She's a wonderful Grandmother. I'm continuing to pray she gets stronger everyday.

We are both still exhausted, I cried all the way home yesterday from Atlanta. My face looks like a blowfish, and I'm sick as a dog, I've been fighting crapiteUS for a month. I'm taking myself to the doc this morning.

The house is so still. So empty, without warmth and joy. I cried all night. We miss Jacob so bad, the pain is unberable at times. I just bury my head in a pillow and scream. I sleep with his pillow and one of his blankets for comfort. The pain in my heart is just so deep. As a friend asked me, How do you get over wonderful? Never, I never will get over it....How can anyone get over the death of a loved one? In fact as time goes by it hurts worse. My heart is so broken into dust, not shards. Forget picking up the pieces, we are just trying to make it by each minute.

I've had enough today.

Sunday, January 11, 2004

Hello Jake Fans~

We have returned from Atlanta EXHAUSTED. Granny Lu gave us all a hell of a scare, bit she making the road down to recovery thank god. Long story short, it was really good seeing my family, but Brian and I need some US time right now BAD.

I have cried ALL DANG DAY about Jake, My eyes are so swollen I can haltf-type.

I pain is so deep it hurts danmit!The despair and hollow feelings are just freaking BRUTAL!

Wr miss our monkey luv bug so bad. And one friend said to me tonight "How do you get over wonderful"? Well I can tell you it is not possible am I really don't give not one.... but two craps what ANYONE SAYS to me EVER!!! We gotta do this our way...period,

VENTING VENTING INFINITY!
Very broken hearted,
Chanda Mommy to the Jakster....
XO

Wednesday, January 7, 2004

Brian and I made it home around 2AM on Tuesday morning. Thank you to all who provided the funds for our air travel, you all are so generous and we appreciate you thinking of us very much. We are exhausted but the trip was really good for us all. A very special Thank you to Chris for picking us up from the airport and being there for us when we came home to this empty house. Brian and I appreciate all you, Lisa and Kaitlyn have done for us. We love you guys.

Life without Jake is empty, hollow. It's horribly difficult to breathe and every second there is a reminder of our monkey in every way shape or form. Going to the grocery store yesterday was horrific. I intentionally tried to avoid those isles that Jake and I HAD to venture down, just to HAVE TO BE FORCED TO GO DOWN THEM ANYWAY DAMNIT! Life IS SO UNFAIR. WE WANT HIM BACK! Our hearts are so broken and heavy with extreme grief and devastation. Every minute is a complete struggle. We smile, but inside we are so heartbroken. I know time will ease the pain, but GOD HELP ME I NEVER KNEW WE COULD HURT SO DEEPLY. Jacob was our life, he was the reason we did EVERYTHING. We wander around aimlessly, trying to get to know each other again without him. Daddy will always be Daddy and I will always be Mommy, we still call each other that. My thoughts and prayers are centered around Brian's and my peace and comfort. This pain is so unberable. I'm counting on Jesus for comfort. I saw the sunset tonight in Charlotte, and I was in awe.... God is awesome...I know Jake is running and jumping and playing and singing...LORD did that child love to sing! We all loved to sing together. God I miss that..

On yet another sad note..My Grandmother is very ill, Jake's Granny Lu. So, we are headed out again in the AM to see about her. Please keep her in your prayers for comfort and peace.

Sunday, January 4, 2004

The balloon release was awesome. Our family gathered around and released a rainbow into the sky for our little man. Brian and I sobbed as we whispered "Happy Birthday to you....Happy Birthday to you...Happy Brithday dear Jacob.....Happy Birthday to you.....

And of course in tru Jake style the blue balloon shot off like a rocket into the sky, it was incredible. It was a crystal clear mild sunny day and Jake made that possible for us to celebrate his life.

It's terrlibly difficult to breathe without him. He is our heart and soul, our shining star, our absolute hero. We are devastated without him. MY HEART SCREAMS Time does NOT make it better. That's bunch OF & *&!!!!!!!!!!! I don't care what anybody says. We were cheated! All Brian and I wanted to to was have a family... and have happy healthy children. This is NOT FAIR!!!! Now in reality my mind has acknowledeged this massive loss and I realize that we must continue on, FOR JAKE. That Doesn't mean that almost every waking minute we are not crying and then laughing about something he said or did.

God help me....I miss my baby so bad. I miss his tiny little fingers reaching up the back of my hair, and twisting away. I miss his sweet little arms wrapped around my neck hugging me so tight. I miss his smell, the butterfly kisses, and the snuggle sanwhiches...THE ARGUING!!! UGH I MISS THE ARGUING!!!!!!!!!!!!!!!!!

I feel him all around me and sometimes I swear I hear him hollering "MOMMY"!! It's awful going to anywhere like Walmart, because you have to FORCE yourself to get in and out...WE COULD NEVER do that with Jake. It was always, Jake FIRST...then what ever Mommy and Daddy needed. We are so lost and heart broken. Brian and I cry all the time, grieving for our little man.

We will survive, but we will never EVER be the same. Life without Jake is lonely, sad, empty, hollow, and very dark.

I sleep with his pillow and a transformer every night. It is comforting knowing that I always had to fight for some sort of SPACE in the bed with Jake and all his beloved animals, toys...etc... So when I roll over on a transformer believe it or not...it does make me smile.

Thank you all for sending up showers of balloons to our little man. You are all so kind and wonderful. Brian and I will be back in town Monday night. I'll update again as soon as I get a chance. Thanks as always for stopping by and checking and and praying.
XO

Tuesday the 30th

In honor of Jacob Aaron Courtney's 5th Birthday our family has decided to release balloons into heaven for Jake. He LOVED balloons, and this time we want to shower heaven with a rainbow of colors in honor of Jake. Our plans are to release balloons on Friday January 2, 2004 AT 3PM EASTERN STANDARD TIME. So wherever you are, and if you would like to send up a little love to our angel, we sure would appreciate it and I know for a fact he will be smiling from ear to ear..

Brian and I are surrounded by love and warmth with our family right now. We all appreciate your heartfelt prayers. This is a truly devastating time. We are completely lost without Jake. It is the most horrible feeling in the world. Deeply broken hearted, empty, and hollow with out our little luvbug.....

Tuesday, December 23, 2003 ST

I cannot even begin to describe the tremendously large hole in our hearts. The emptyness, the silence is brutal. God we miss our baby so much. I never thought I would be able to breathe without him. I never thought the world would continue to turn. I guess I thought time would just stop....

I can tell you that time...and only time will help heal the pain. It's so deep. Jacob made such an impact on so many people. He really was our shining star. He was our everything, god rest his soul. I feel him all around me and we are so truly devastated without him. This morning I caught a whiff of his scent and just dropped to my knees and wanted to die.

His memorial service was beautiful, uplifting like he was. The balloon release to me...signified his soul racing to heaven. Knowing Jacob he pushed everyone else out of line...just to get to see Jesus first....that's our boy....

Thank you Lord Jesus for blessing all our lives with such a wonderful brilliant spark of life... Thank you Lord Jesus for 5 years of wonderful love, hugs, kisses, and memories.

Jacob Aaron Courtney Mommy and Daddy love you bigger than a dinosaur....bigger than the WHOLE WORLD......Bigger than the universe, and bigger than the Milky Way.....Infinity.....

We are heading out of town for a while to get away. Please have a happy holiday season and thank you all for donating in Jacob's honor to Godstock I cannot tell you how grateful we are to have had the support and LOVE of GODSTOCK, and the finacial assistance was amazing. I just hope that any money sent will support another family in need during a tremendously stressful time in their lives. Thank you JOHNBOUK and family for you unconditional love and support. WE LOVE YOU ALL.

Thank you for stopping by and checking in again and always for praying......

Friday, December 19, 2003 1:23 PM CST

****UPDATE****

It is with great regret and sorrow to tell you all that Jacob passed away last night at 9:30pm. He was in his mom and dads arms, very peaceful and calm when he passed.

The next few weeks are going to be very painful for Brian and Chanda, please pray for them to have the strength they need at this time.

Memorial services will be held on Monday at the Raymer Funeral Home, at the corner of Sam Furr Road and Highway 115 in Huntersville.

**HOURS**
Family visitation will be held from 1:00 - 2:00.
The memorial services will be held at 2:00

Chanda and Brian have requested that in lieu of flowers a donation be made in memory of Jake to:
Godstock
PO Box 661
China Grove, NC 28023

Friday, December 19, 2003 9:25 AM EST

It is with great regret and sorrow to tell you all that Jacob passed away last night at 9:30pm. He was in his mom and dads arms, very peaceful and calm when he passed.

The next few weeks are going to be very painful for Brian and Chanda, please pray for them to have the strength they need at this time.

Memorial services will be held on Monday at the Raymer Funeral Home, at the corner of Sam Furr Road and Highway 115 in Huntersville.

Chanda and Brian have requested that in lieu of flowers a donation be made in memory of Jake to:
Godstock
PO Box 661
China Grove, NC 28023

Auntie Pat

Thursday, December 18, 2003

Jake is still fighting hard. He has had a few good moments here and there. He has opened some christmas presents and enjoyed doing that. We our surrounded by family and friends now and are very glad for them all being here.

We are completely heartbroken. I don't know what else to say.

I'll update again when I have any news. Thank you all for stopping by and checking in and praying. We are very grateful.

Tuesday, December 16, 2003

Jacob has taken a turn for the worst.

Saturday we noticed he was having labored breathing, we took him in to the hospital and an x-ray revealed that the tumor in his chest is pushing on his heart causing a main vessel to be cramped and this makes his heart and body work harder to pump and makes him breathe faster.

He is on oxygen here at home and we are surrounding him with love and trying to keep him comfortable while managing his horrific pain as best we can.

No one knows how long we have with Jake, it could be a few days…or it could be a few weeks. We are all just praying for a miracle that he is able to make it through each day without the pain he's had to endure and is able to enjoy Christmas and his birthday on January 2. We have contacted our immediate family and some are on their way now to come see him. This is an extremely stressful time right now; we need prayer like we’ve never needed it before.

Brian and I are devastated, heartbroken, and on our knees begging for mercy for Jacob. I don’t really know what else to say. We are all going to absorb as much as we can from Jake and just be here for him.

Our family appreciates all the prayers, encouragement and as much space as possible. We are all taken care of in every aspect; we need nothing but prayer for our little man. I promise to try and update you all with anything new in a few days.

Thank you for understanding.

Friday, December 12, 2003 1:22 PM CST

Hello All~

We are all still taking it one minute at a time. Forget one day at a time, as fast as things change/happen around here.

Our nerves are shot beyond words. Several times a day I just want to beat everybody up and snap their heads off. Not because I'm a mean vicious person...but because my child is suffering so horribly.

I am SO ANGRY!!!!!!!!!!!!!!

I believe I could definatley check in to a nut house with ease(Brian don't you get any freaking BRIGHT ideas either!)

John Bouk gave Jake this Power Ranger punching bag thing last summer. I kick its ass daily, but it's not hardly worth it because it can't fight back. I lock myself in the bonus room and beat the hell out of a little red plastic punching bag.....GOD WHAT IS WRONG WITH ME? I THINK I'M LOSING MY MIND.

OH forget it! I lost my damn mind a long time ago.........

Jake has had a rough couple of days. Oral morphine had to be given three times this morning to soothe his pain. Once settled, he was ready to get out of the house. Of course we went to his favorite place BLOCKBUSTER. They all know us by name. Jake could go there every day and stay in there for at least an hour. Today he rented 5 new movies. Then we headed to Wendy's for a kids meal to go. Those nuggets are his favorite, but man was he pissed when he got that Tweety bird bobblehead toy AGAIN. He does not understand why he keeps getting the same toys all the time in his kids meals? I can never explain to where he will understand either.

Tomorrow is Disney on ice, we are planning on taking Jake is he feels good enough to go. He's never even been to the circus. Every time the Ringling Brothers come to Charlotte, we were either in NY, or in the hospital AND THAT REALLY STINKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Not because of the elephant poop, but because we never get to go and enjoy the freaking circus...or anything remotely close to an event like that. HOPING AND PRAYING HOPING AND PRAYING HE GETS TO GO AND ENJOY THIS SHOW!!!!!!!!!!!!!!!!!!

That's all the energy I have for this entry today. Thanks for stopping by and checking in on Jake, and praying...it means the world to our family.

Jakes labs:
WBC = 3.7
HGB = 8.9
PLT = 106,000
ANC = 2257
Nope, I don't have ONE clue....

Tuesday, December 9, 2003

Hello ~

(Day 90 on Protocel)

Not really too much to tell you. Except Jake and I got out today and had luch with Daddy at his work. Jake seems weak and very tired, he misses out on alot of Daddy time, so when he asks we hit the road. He's had a really rough month. I'm only hoping he starts eating well and gain back some of the weight he's lost. He weighed 28lbs yesterday. Not good.

His labs were drawn yesterday.
WBC = 5.8
HGB = 8.5
PLT = 156K
ANC = 4988

Your guess is as good as mine on what's going on in side our little guy. We are forever praying for no more disease progression and fearing the worst. We are only human. I have no more words today.

Thank for stopping in and checking in and for the awesome support and prayers.... always

PS

New photos from the first few days in oklahoma and this past weekend.

Thursday, December 4, 2003

Hey Y'all~

Well we are home. I wish I could say that we got out and enjoyed ourselves while on vacation...but that really didn't happen. We are SO glad we were in Oklahoma for 11 days and got to spend time with our family. That is so important to us.

I cannot explain in words what I've seen happening to my child in the last few months. I can let you know that we've had the ABSOLUTE HELL scared out of us a few good times since starting Protocel. I AIN'T even gonna go there right now. Please know that Jake needs your prayers and let me just say that I think if we HAD NOT started Protocel, Jake would be in a lot worse shape.

Today's clinic visit went well, his labs are unbelievably HIGH.

WBC = 11.8
HBG = 9.7
PLT = 162,000
ANC = 9958

He has been complaining of pain everywhere. When I say everywhere, I MEAN EVERYWHERE. One day it's the shoulder, the next it's his back, another day ot might be his arm. We are pulling our hair out trying to figure out what is going on. I decided tonight that I cannot try to do that anymore, I'm driving myself crazy and everyone around me. Actually I flipped my lid a long time ago, I just think the people that care about me are tolerating me at this point...including Jake & Brian.

Anyway, my point to all this rambling is this. Jake's eating and talking our ears off tonight. He's enjoying being at home. Mischief is still cat/dog and this morning; he actually played fetch with me. I know I KNOW I think this whole house has gone MAD I TELL YA! Since when does a cat play fetch?

Looking forward to a great weekend with family and starting on the Christmas decorations.

Thank you ALL for stopping by and checking in and PRAYING for Jake.

XO

Monday, December 1, 2003

Hey Y'all~

Jake is up and down, in and out. We are managing his pain with motrin sometimes, and morphine sometimes. He eats, and then refuses. I had to resort to FORCE feeding him with a oral medicinal syringe the other day. We are at our wits end with him. He's SO stubborn. This child cannot be fooled. (DUH) I try to add bannanas and this protien powder stuff to his yougurts and he calls me on it. Brian and I are so stressed out. I refuse to let him waste away damnit. I REFUSE!

Our trip has been confined to the house except for Monday when we went to see Santa in Tulsa and today when we went to Grama's retirement celebration at the refinery. She works with the nicest people. I could see the sadness in their eyes when they looked at Jake. It kills me, but if he feels like getting out, we ARE GETTING OUT!

I don't really know what else to say. What do you say when your world is crumbling around you? Well, you know me...I'm gonna put it out there. I'm so glad we are here with family when we need them the most. This is pure hell. We smile and nodd, but inside we are just dying.

Wednesday, November 26, 2003

Hello All~

I just wanted to update and say how much we all appreciate the warmth and encouragement of all your entries.

Oklahoma is so peaceful. We love it here. Jake has good days and bad ones. We are still taking it one day at a time. It's really hard for us all not to be just sick with fear all the time. It's so hard watching your child hurt so bad. We've been controlling his pain with Motrin, it's sporadic. For 8 hours he might be fine, the next 8 might be horrificly painful for him. I have cried everyday since we've been out here. Brian and I are terrified.

Jake is enjoying "Gwama" & Pop alot! Pop even named a rooster after Jake and I swear it's the most gorgeous, cantankerus, rooster out there. Jake collected eggs the other day and threw the first one in the basket. Well, hell....we didn't tell him how to place the egg in the basket. It was hillarious.

I'll have some great photos to post once we get back in town. I hope you all have a wonderful thanksgiving. Thanks for stopping by and checking in on Jake and praying. He's our everything.

XO

Thursday, November 20, 2003

Hey Jake Fans~

We have decided to travel the road and GO WEST. YEP we are headed to Oklahoma, Claremore that is... Daddy's hometown. We love it there and now Poppy has chickens and Jake is beside himself to get his hands on those EGGS! You know how he is about dying eggs for easter right? Should be fun.

Jake is up and down... His pain comes in and out like waves of the ocean. I HATE to use the ocean as an analogy to his pain, but it's the only thing I can think of, and it pisses me &*# $ OFF because the ocean was once my serenity, my peace, the one place I could look to and relax, and feel like I could be closer to GOD. I don't know if I'll EVER be able to look at it again and NOT associate it with Jake's horrific pain. NOOOOOOOOOOO DAMNIT I'm not mad at GOD, so don't go there. Yes I am ANGRY WHO WOULDN’T BE. And don’t any of you worry I let GOD know exactly how I feel now whether he listens to all my ramblings is another thing.. I’m ONLY kidding I KNOW HE LISTENS!

I know there is a reason for everything and if anyone believes in GOD & HEAVEN IT'S ME, All I have to do is look at my son and the sunset like the song says and believe.

Brian and I are up when Jake is up and tore down when he hurts so bad. We are trying to take it one day at a time and make the best of every moment we have.

Jake is so strong and such a fighter. He's our hero. That's all the energy I have for today. I hope you all have a great thanksgiving. I'll update when we get back in town.

Tuesday, November 18, 2003

Have you ever felt like you should be commited to a mental institution? Well these past few days have surley had me searching facilities in the area.

While jake was sleeping which he did alot of yesterdday, I found myself on my hands and knees on the floor in the garage screaming and crying and beating the hell out of that hard cement DEMANDING this tourture to stop!! begging and pleading for his comfort. To say the least there was NOTHING I could do to comfort him. That is just horrible. Then just as if yesterday never even happened.... Jake woke up from his nap pinging off the walls. NO PAIN, and wanted pickels, cheese, crakers and a chocolate SNACK PACK PUDDING! And I want you to know he looked at ME like I was crazy for staring AT HIM!

I hope the Protocel is working. There is NO reason for him to go from no pain to extreme pain like that... in that amount of short time. Brian and I are alright a little shook up, but still trying to take it one day at a time.
I don't really know what else to say it all sounds completley insane. Jake is comfortable this morning so far. I'm keeping my fingers, toes and eyeballs crossed.

Thank you all for stopping by and signing the guestbook and continuing to pray.

Sunday, November 16, 2003

Hey Jake Fans~

Well I believe Jake is officially lysing again. His pain has returned and he has had morphine twice today. What am I feeling you say?

that I'm losing him, my heart... my soul...THE VERY LIFE BRIAN AND I EXIST FOR!

I'm on my knees every second begging for my sons LIFE! This is so unfair, I just want to crawl in a hole and die the most horrible suffering painful death. I'm begging GOD over and over to TAKE ME! Leave him; I've had a full happy life! I'm ready he's not. DAMIT DAMNIT DAMNIT!!!!!!!!!

These are the emotions I go thru when I watch my child suffer. I want all of you to know that I only exist because of Jacob Aaron Courtney. He has made me the strong woman I am today. He has shown me TRUE LOVE, courage, strength and determination. Brian and I are SO vulnerable when Jake is down. I cannot tell you how we feel there really are no words. We are scared.

Jacob is playing his Magic School Bus game right now and seems to be comfortable. How long will it last I don't know. All I know is that he is hurting!!!! Damnit to hell the cancer that is inside him!!!!

I will not apologize for writing my feelings, you can either read it or not I really do not care. Most who read this know me. And accept me and my feelings...I just wish his cancer was in a form I could open that can of whoop ass on and get this over with. Doesn’t everyone?

All right as it stands we shall see what the next few days hold for the Courtney Clan. If there is anything I ever wish everyone would do for Jake tonight, it would be to snuggle up with your babies, and read those favorite books and watch them fall asleep in your arms.... safe and secure…and pray that you always have happy moments, healthy days and snuggle sandwiches….

I'll update later.

Thanks for stopping by and checking in, and please say a prayer for our Jake tonight...

XO

Monday, November 10, 2003

Hello Jake Fans~

We had a wonderful weekend. Saturday Jake and I enjoyed a visit & dinner with Auntie Pat. Sunday we traveled with Mrs.Bev to her sister's house Judy in Belmont this weekend. Beautiful weekend spent with wonderful people. **See Photos**

Today is day 62 on Protocel.

Jake's appetite decreased slightly for about 4 days and he'd had a small back ache for a few days, but not enough to keep him down. We have not seen any visible swelling anywhere or Jake's chest and he's not complaining of pain so maybe He could be lysing again in a different area of his little body? Lysing has to do with Protocel and it's ability to rid the body of yucky stuff. If you want to know more about this process, check out the link for Elonna's site above. This is the most informative website I have ever seen on Protocel.

Jake is still rolling around on the floor whollering the cat and Daddy as much as possible. This morning he decided he wanted a ham sandwich, so maybe he's on the upswing again. He's put on some weight and is looking so good. I really hope this continues, he's enjoyed life so much this past month. I find myself praying over and over in my head continuosly for his healing, strength and energy. Brian and I are trying NOT to drive ourselves crazy with the what if's. It's VERY HARD when you don't know what is going on inside your child's body. We feel like Jake is doing GREAT because he feels so good. I know that's a great sign, but it is so VERY frustrating because we've always depended on the scans to keep us up to date. As it stands now, I think we will wait until possibly January to repeat the scans. We are REALLY trying to take it one day at a time.

Right now he's singing the Magic School Bus theme song and laughing. It's such a joy to watch him light up with life. He is my heart and soul.

Thanks for stopping by and checking in on the Jakester. Thank you for praying too!
XO

Friday, November 7, 2003

Hey there Jake Fans!

We are hanging in, hanging out and HANGING ON!

Doing just F... I... N... E...!

We've kept busy this week doing as much outside time as possible. I'm afraid we've had the last of this heat wave. Well, it is November 7th and IT'S HOT, but not for long. For some reason I can't get in the mood (HEEEEY WATCH IT!) for the holidays with warm weather. It's really odd to me to listen to the radio pumping out the Christmas songs with warm weather. Oh well...(I have to find something to gripe about)I'm sure it will be 30 degrees in three or four days anyway..

Jake's doing great! we met up with Harrison & Gina today, enjoyed lunch, play time, SUNSHINE & FRESH AIR! LOVE IT LOVE IT!!!!!!!!!!!!!!!!! Great seeing those guys outside of the medical setting. Love em lots!

Other than that, not too much else is going on to report. The cat is still a maniac and so is Jake. Brian said he was suprised I still had hair left this morning. I said it's like this all day long baby! Hallelujah!!

That's about it, signing off now... have a great weekend and thanks for checking in and pryaing for the Jakester!
XO

Monday November 3 rd

Jake's counts are slowly coming up!

He got the flu shot and was NOT TOO HAPPY about that. Other that we are still doing good. This morning he's STRUTTING AROUND THE HOUSE in his underwear and POKEMON slippers and NOTHING ELSE What a little SKUNK!

We will update you later! Have a great week!

Sunday, November 2, 2003

HOLY COW It's already November!

I cannot believe how this year has just vanished before our eyes. So much has happened. Today three years ago We were being transferred to Carolina's medical via ambulane because an chest cavity. Brian and I'll never forget that horrifying day EVER. Alot has transpired over these last three years. Unbelievable things have happened to us. Strangers praying their heart and souls out for Jake to be healed. We have met so many wonderful giving friends and have always felt completely surrounded by love and support. We thank god every day for everyone who's touched our lives in so many ways.

Today Jake is doing wonderful. We have all just finished running around the house pretending to be power rangers fighting each other. Laughter, snuggle sandwiches, and a WHOLE LOTTA LOVE are filling these walls on Riva Ridge Ct.

It's amazing because Jake is feeling so good. No pain, full of energy, eating, running, jumping and playing, singing like a maniac. The Kitty and Jake have really become attached to each other. Kitty goes wherever Jake does.

We had a really nice Halloween. Friday Jake was invited up to the South Rowan YMCA to get an eary start on trick or treating. Of course he jumped right on in and never skipped a beat. He's never really met a stranger. Thank you South Rowan YMCA, John, Tomi, Jenny we love you guys!!!!!!!!!!!!

We had a few friends over for dinner Halloween night. We took Jake & Kaitlyn down the block in the wagon to trick or treat. God they were cute! They both RACKED up with the candy but were pretty stingy handing it out here at the house in the kids bags. Of course all the kids looked at me like I was crazy or something cause I was dressed like a butterfly. Man, Halloween is NOT just for kids. My neighbor still cracks up when she sees me. WHAT????????????

Saturday Jake explored the house and his toys and played for a really long time all by himself. He has a HUGE imagination and entertained himelf for the majority of theup my butt all the time. Every time I'd check on him, he'd be playing away with the kitty right beside him. He's growing up so fast. I've seen so many changes this last month in particular. He has definatley come to life again. Praise GOD, Praise PROTOCEL. Some MAJOR CHANGES HAVE BEEN HAPPENING HERE.

Other than that, Jake and Daddy are having the morning out and going to go see the new movie Brother Bear. Mommy is going to stay at home and veg. Well, I probably won't veg...OH Hell unfortunately there is always something to do here. UGH.

Friday's labs were good
Platlets were still low, but Doc thinks theya re on the rebound. Jake's got clinic in the am. Will update when and if I have any more news to share.

Thanks for stopping by and checking in on the Jakester & praying. Praising God always and taking each one day at a time.
XO
**New photos**

Thursday, October 30, 2003

Happy Halloweenie!

Just a quick note to let you all know Jake's counts are still rising and he's STILL PINGING! PRAISE GOD PRAISE PROTOCEL!

I have added a few photos from our pumpkin carving party last night. Hope you all enjoy.

Yesterday Gina and Harrison came over for a while to visit. Harrison LOOKS GREAT! and SO DOES GINA! It was so nice to get together with them outside of the medical setting. It's so wonderful to see the boys playing and running and laughing. How awesome!!

We are heading out to run some errands this morning and Jake is beside himself because he gets to meet Daddy for lunch today. YAY!!

Enjoy the photos and Happy Halloween everyone!
XO

Monday October 27th

AND HIS Counts are UP!!!!!!!!!
WBC = 1.7
HGB = 9.7
PLTS = 23,000
ANC = 900
YAY! HALLELUJAH! YAHOOOOOOOOOOOOOOO!

We are HOPING to hook up with Harrison and Gina while they are home. And today we are getting treats ready to hand out Friday night.

Jake and I are making ghosts and deciding on how to carve our pumpkins. I bought Jake a 24lb pumpkin, pretty cool huh?

Yes, he's still PING PING PING PINGING!!
Lots of love and laughter going on here!
XO

Sunday, October 26, 2003
Hey Jake Fans~

YEP...YOU GUESSED IT Jake is STILL PINGING OFF THE WALLS.

No complaints here. His appetite is veracious, his energy level is unbelievable.

My child has come to life in the past few weeks and life is wonderful ONE DAY AT A TIME here on Riva Ridge Court. Thank you GOD, Thank you Protocel.

Home health is coming tomorrow to draw labs. I'll update with any new NEWS if I have it.

Thanks for stopping by and checking in on the Jakester. AND THANK YOU FOR PRAYING!

Hope you all are having a great weekend.

**
More Photos for your viewing pleasure
**

XO

Friday, October 24, 2003

Hey Y'all

Quick update, Jake received blood & platelets yesterday. The chemo he received in NY has absolutley nailed his counts. His marrow is so fragile.
Labs yesterday
WBC .3
HGB 5.6
PLT 10,000

He's still eating and full of energy. Asked for a grilled cheese this morning for breakfast. YAY!

HOPIN & PRAYIN ALWAYS!

Thanks for stopping by and checking in & PRAYING FOR JAKE!

Wednesday, October 22, 2003

Hello

Jake is still doing REALLY REALLY well, despite his lab results.

WBC= .5
HGB = 6.6
PLT = 29,000
ANC= 210

Pretty LOW.

Jake's still eating really good, and playing like the little crazy man he is. As always, we are hoping and praying and hoping and praying and hoping and praying infinity!

Thanks for stopping by and checking in on The Jakester, and saying those PRAYERS!!!!!!!!!!
XO

Monday, October 20, 2003

Hey Jake Fans~

Can I just say being at home is so cool! We are beside ourselves with complete happiness. Jake is doing GREAT! **MORE NEW PHOTOS FOR YOU... CHECK THEM OUT***

Jake's eating, playing, and smiling alot more since we've been home. He's all about Daddy these days. He and Daddy LOVE to watch the cooking channel and love to cook eggs together. Jake is eating things he hasn't eaen in 6 months or more. What a transformation. What a miracle!

We had a great weekend. Thank you to Bill & Bev for roviding a wonderful meal here at the Courtney casa Saturday night. We love you guys so much.

Other than that we are praying HARD that Jake continues to do well. I'll update again when I have more news. Thanks for stopping by and checking in on The Jakester.
XO

Saturday, October 18, 2003

**Updated photos of Jake's Chest. Pay particular attention to 10.8 versus 10.18...

GO PROTOCEL GO!!!!!!!!!!!!!!!!

GOOD MORNING JAKE FANS!

WE ARE HOME SWEET HOME !!

JAKE IS FEELING GOOD AND EATING GOOD!!

NO PAIN AT ALL!!

ALL IS WONDERFUL IN THIS HOUSE HOLD!

Thank you for the prayers and encouragement, support and love.

Tuesday, October 14, 2003

Hello Jake Fans~

Jake's still doing great. EATING, LOTS OF ENERGY,AND YES THE SKUNKNESS IS IN FULL FORM!!!!!!! It's unbelievable!!YAY!!!!!!!!!!!!!!!!

His low dose chemo started yesterday and he's doing just fine.

We are all ready to go home. Daddy is heading out today, and we will follow on Friday.

We appreciate you stopping by and checking in on Jake and saying those prayers!
XO

Sunday, October 12, 2003

Hello again Jake Fans~

Jake is doing fine. NO PAIN, NO MORPHINE SINCE WEDNESDAY. Still running around like a mad man.

Are you scratching your heads too? Hmmmmmmmmmmmmmmmm..........................................

Whatever the case, we are absorbing every SECOND of him feeling good. Today we had a nice brunch and went to see the movie GOOD BOY. It was cute but if it lasts over an hour Jake starts to get boooooooooorrrrrrrrrrrrrrrred. So, we left with like 10 minutes to GO. UUUUUGGGHHHHHHHH!

Other than that we are expecting to be in clinic in the morning and get him started on a very low dose chemo for 5 days and come HOME!

Thanks for stopping by and checking in on The Jakester, and PRAYING!!!

PS
Special prayers for Morgan Barnes , she tripped and fell Friday night and broke her right femur bone pretty badly. She had surgery Saturday morning and is recovering at MSKCC now. Please visit her page and wish her well please...

Friday, October 10, 2003

Well, not bad news but really bad news.

Jake's disease has significantly increased in several areas of his chest. The docs here are very concerned with an area of tumor that is nearing his spinal column, that could potentially cause paralysis.

An MRI will be done here at MSKCC to confirm what is exactly going on near his spine at some point this next week, in conjunction with VERY LOW dose chemo starting here on Monday. Then we are planning on returning home and continuing to take each day one day at a time.

As of today Jake has not needed ANY morphine for about two days now and has been running around like a mad man. So I'm sure you can imagine our minds are going nuts wondering what in the hell is going on inside him, and of course hoping that the Protocel is working in some way, shape or form. The knots in his chest appear to be vanishing and he has not complained of any pain for two days now............

I'll update when I have more news to share. Please continue to keep Jake in your prayers.

XO

Wednesday, October 8, 2003

Hello

Sorry for the delay in the update since we’ve been here. We made it fine and are all settled in. Daddy arrived today and Jake is very happy about that. We've had a rough few days, I'll go into that later, when I have more details about Jake's disease situation. Please pray for Jake, he is in pain and is taking morphine to keep him comfortable.

Pet scan was today and he did very well, he fell asleep, no problems…Nuclear Medicine LOVES JAKE THEY CANNOT BELIEVE HOW GOOD HE IS. He is GOOD for them, for me he’s a little skunk…a cute little skunk but you know what I mean.

CT is tomorrow and we are meeting with the docs on Friday to determine what route if any we should be taking.

I’ll update when I have more news.

Thanks for stopping by and checking in and praying!
XO

Sunday, October 5, 2003

Okay the Panthers didn't quite SPANK New Orleans, but they WON and WE ALL had a blast Thanks to Harris Teeter & M.A.W.!!! Thank you Guys you are Awesome!

Jake enjoyed the game and seeing his favorite girl "Kenna"

Go PANTHERS!!!!!!!!!!!!! See photos!

I'll update again once in NYC!

XXOO
Chanda

Tuesday, September 30, 2003

Hello Jake Fans~

We had a terrific weekend. Saturday Donna, Noah, ANdrew, John, Lydia & Adam came for dinner. Jake was totally PINGING off the walls because he had boyz to play with. Dinner was fantastic and how cool to be able to just relax and enjoy everyone. And my little brother came up from Georgia for the weekend and Jake totally WHOLLERED him. It was so good to get to watch those two play together. Jake ABSOLUTELY LOVES HIS UNCLE JOSH, Josh is terrific with Jake and will be a great Dad one day himself.

All I could think of was how splendid it would be to have days just like this past week and weekend EVERYDAY for the rest of our lives.

This week has been fun. Yesterday we had lunch with our favorite person in THE WHOLE WIDE WORLD....WELL Daddy of course! Today we drove Mischief to the vet for a check up and a shot. I swear the cat should have been a DOG, because he crawled right up in Jake's lap and laid down in the car and went to SLEEP! NO PROBLEMS, NO FREAKED OUT KITTY KITTY, What a great DAY! What a relief really

Other than that we have been BUSY managing to STILL unpack this house and settle in, and stocking up on MANY MANY MANY SNUGGLE SANDWICHES! NOBODY CAN EVER HAVE ENOUGH SNUGGLE SANDWICHES!!

This Sunday we are headed to the Panthers game care of Make A Wish, how nice huh? Brian and I are WAY excited, because this will be Jake's very first pro football game. I'll take lots of pictures for y'all.

Oh yeah...we are flying out for NYC Monday. Tests are scheduled for Tuesday, Wednesday & Thursday. Will advise on what will be the next step when we have decided ourselves.

Gotta go GO AND SOAK UP SOME ME TIME and wait patiently for my little whipper head to wake up from his nap to GO SWINGING OUTSIDE!!

Later Gators!

GO PANTHERS!

Thanks for stopping by and checking in on the Jaketser, and praying...

Friday, September 26, 2003

Hello Jake Fans~

Jake & I had an INCREDIBLY relaxing time th Holden, Beach thanks to the Ward Family. This beach is awesome and completely QUIET. I SANK my TOES way DOWN in the SAND and melted underneath a warm BLANKET of Holden Beach SUNSHINE!!! I could not get over the pure beauty of this wonderful place. The dolphins were playfully swimming and the butterflies were fluttering everywhere. How peaceful....Bill & Bev, you guys are great and we love you so much, We will never be able to thank you enough. Your generosity is overwhelming, and we appreciate you guys more than you will ever know. It's so good to have such good friends like you guys and the Bouk family. Without you guys, we'd be a WRECK! Thanx for keeping us straight and loving us so much!

**SEE PHOTOS**

I am firming up NYC plans for the week of the 6th (I think) I PROMISE I will update when I have everything set in stone.

Everything else is great, We are really glad to be home after a relaxing time at the beach. Very glad to be in Daddy's arms again, such a wonderful thing...

We are looking forward to a great weekend.. Hope you all have one too!

XO

Thanks for stopping by and checking in on the Jakester.

Monday the 22nd

Jake's labs have rebounded HALLELUJAH!
WBC = 3.2
HGB = 8. something
PLT = 77,000 HECK YEAH!

Jake and I have been invited to Holden beach for as few days this week to visit friends.

I'll update with pictures and with news of any plans for NYC.

XO
Later gaters, we are gonna soak up the sun and tell everyone to lighten UP!

Sunday, September 21, 2003
Hey Jake Fans~

We had a great weekend. My sister & Dad came up fow a visit. We had a great time, it was really good seeing them both, it was really nice having family here. **SEE PHOTOS**

Jake is well, pinging off the walls, terrorizing the kitty. That's OK the little skunk terrorizes us in the WEEEEEEEEEEEEEEEEEEEEEEEEEEE early hours in the morning, so payback is hell.

Jake's got clinic tomorrow afternoon. Other than that we are all alright and enjoying being at home, and getting into a "somewhat" normal routine?

BIG FAT SPECIAL THANK YOUS GO OUT TO:

Tot & Rebekah, thank you for taking Jake to Toys R US and buying him that Power Ranger toy he's been drooling over for MONTHS! You guys are GREAT & we love you Thank you SO MUCH!!!

Miss Haley, the dinosaur capsules were a hit and Jake COMPLETELY SPAZED out over them in the TUB Saturday night. The treasure chest is precious and Jake has all his precious "jewels" he swiped from child life stored in it. You are so sweet to think of him.

That's all for now, I'll update you all with more news, when I have it. Thanks for stopping by and checking in on the Jakester and as always...saying those prayers.
XO

Wednesday, September 17

Hello Jake Fans!

Been BUSY BUSY BUSY hitting the ground running alot these days. Jake has been feeling good and has ALOT of energy I'm attributing that to the Protocel. His appetite is great and he's gaining weight quite nicely. AND Talk about Chatty Cathy LORD THIS CHILD IS A LITTLE MANIAC YAY!!!!!!!!!!!!!

The Godstock event last weekend was fun and Jake and I met alot of wonderful folks wo have been faithful prayer warriors. I wanted to Thank JOHNBOUK again for all his wonderful freindship and always having such a big heart.Our friends Lisa & Katelyn went with us on Sunday and the kids payed their little hearts out. Thanks Lisa & Katelyn for coming with us! **SEE PHOTOS**

Kitty news, the two scardy cats were returned I'm sad to say BUT mischief stays, he too has lost his mind we feel...so he fits right in here on Riva Ridge Ct. I gave him a bath and he LOVED it, WEIRDO! I brush his teeth, he LOVES it the WEIRDO!! See what I mean?

Well Home health is coming again this morning to draw las and see where Jake's labs stand. He's stopped the neupogen yesterday and we were all happy about that!

We've got crazy week planned trying to play catch up and visit while we can. I'm assuming we will make plans for NY once Jake's Platelet issue has stabalized. I promise to let you all know here when and where etc..

Well, we actually got to go out on a DATE last night! Nurse Courtney came to sit with Jake and the tiny tiger. THANK YOU COURTNEY!!!

YAY! YEP The man of my dreams took me out to dinner and to see Dave Matthews in concert, How cool is that? I was very impressed at how good they were in concert. Great night for a date with the one you love, nice snuggle weather yeah! It was a wonderful spending that time with you Brian, I miss that terribly. I love you.

Well other than that, we are painting away inside and trying to still get settled in here. We love this house and our neighbors have really sweet kids that seem like they enjoy Jake's never ending questions about school and stuff....I'm just glad Jake is a social little bug, of course he comes by it quite honestly huh?

Update ya later, thanks for stopping by and checking in and saying those prayers!
XO
**SEE NEW PHOTOS**

Friday, September 12, 2003

Hello Jake Fans~

Well, Jake's labs are holding steady.

WBC = 3.0 (3,000)
HGB = 8.9
PLT 45,000
ANC = 1690 or something to that effect anyway...close enough

We have been crazy busy running around and trying to absorb every second of sunshine and fresh air we can.

The Protocel is being consumed quite easily and each day gets easier & easier. It seems to be better to just squirt it in his mouth. Jake's getting used to it. His Daddy is taking it with him so I think that he feels better knowing that Daddy is right there with him!

We have a new addition to our family. Well we actually have three The other TWO are on probation, (OH GO AHEAD...I know I'm past being crazy, what the hell does a little more crazyness matter at this POINT!) It seems they like to associate with the back of the washing machine better than the Courtney's. They won't come out of the laundry room. SOOOO, who knows maybe they'll live in the laundry room FOREVER????

ANYWAY, the little LUVBUG in the photos is a KEEPER and his name is "MISCHIEF". He should have been named cat-dog, cause I believe he's a dog trapped in a cat's body. He's very curious and playful and loving, and very vocal. Exactly what we need right now. Jake loves him and he follows us all wherever we go. He's alot of fun.

Well that's all the drama from this neck of the woods. I'll update again with more news later. We plan on having a great weekend and soaking up as much of the outside air we can handle!

Thanks for stopping by and checking in on us and always saying the wonderful prayers for Jake!
XO

Godstock is having their Annual Godstock Event
When: September 13 and 14
Where: South Rowan Soccer Fields
All branches of the military will be represented

Friday, September 12, 2003

Tuesday, September 9, 2003

Hello Jake Fans~

**SEE NEW PHOTOS**

Well our weekend was FLAT OUT FULL OF CATCHING UP ON CARPET ANGELS & SNUGGLE SANDWICHES!!.

Jake has thoroughly enjoyed being at home and playing outside on his swing set. He loves our new neighbors and wants to go outside and socialize with them and their children every chance he can get. He’s such a little social butterfly. It is truly a blessing being with together as a family again.

Jake saw Doc McMahon yesterday and had to have platelets again. His labs were a little better:
WBC=2.1
HGB =3.8
PLT =19,000
ANC =1197 (much better)

Jake has been on GCSF now for about a month and is walking around at times like a little old man. GCSF or neupogen (White Blood Cell booster) causes him to have bone pain. Nothing a little Tylenol can’t help though.

Jake’s appetite is great he’s my little mouse again eating all the cheese & crackers he can. Don’t even get me started on the chicken nuggets and lunchables…. LORD, he’s eating like his uncle Josh! (For the record, my brother Josh is “the human garbage disposal”) Josh can eat a full meal at dinner plus an extra helping or two and then turn around and eat a ham sandwich an hour later. And the pisser is that he’s a BEAN POLE! Anyway, Jake’s is re-gaining his appetite on his own without TPN, or Megace…etc. YAY!

We should be heading back up to NYC in a few weeks once Jake’s platelets recover for re-evaluation and scans etc…I’ll update you all with further details when Brian and I have “the plan” for the little man straight. In the meantime, from now on Brian and I have decided to start Jake on a product called Protocel. Please follow the above links if you have any questions, or email me directly.

Let’s see…Hmmmmmmmmmmmm…. well, I’ve decided to start painting. I’ve painted my kitchen. Did I mention that painting should be a form of brutal punishment? I think I’m absolutely the WORST painter in the world. But, I forced myself to think that by painting, I’d get some pent up anger out, and because my mind has been going crazy these days.

WELL…BIG FAT HAIRY DUH!!! I figured out the hard way (like always) that painting makes you focus on a lot of things…including a lot of REALLY SUCKY things. Anyway, Jake is a great helper and continuously pays me wonderful compliments like “MOMMY YOU ARE DOING A WONDERFUL JOB” even though I’ve nailed the ceiling and windows, blinds, dropped paint everywhere on the floor and proceeded to speckle myself from head to toe and now look like I have a million MORE freckles! I’m just glad the paint came up off the linoleum…I think I’ll leave my FAUX freckles on for a while….

Other than that, an educational evaluator for CMS came out this morning and she figured out very quickly that Jake is off the charts I’m proud to say. He’s so smart! Brian and I are trying to get Jake into a pre-school environment on “our” schedule, low scale size wise because of his counts etc…So, she’ll be in touch and maybe I can get Jake into a classroom one day a week or have someone come out to the house and work with him? Whatever the case…. in the meantime, we are going to start working with his reading skills. He’s writing well, and shows a lot of initiative wanting to learn LEARN…. LEARN!!! YAY!!

Well, I think home health is coming out Thursday for labs. I’ll update you all then and advise on the dreaded platelet dilemma!

Thanks for stopping by and checking in on Jake and AS ALWAYS, being so faithful and praying!

XO

PS
Don’t forget to check out the new pictures….

Friday, September 5, 2003

Hello Jake Fans~

Home Health came by this morning and SEE PHOTOS Jake decided to make them draw his labs with his "tubie" poked thru his blanket. I swear that dang blanket is an extension of his little body..

Well we are officially 31 days post chemo...and today's lab results are:

WBC = .8
HGB = 9.3
PLT = 48,000
ANC = 344

JINKIES!

Well, Doc wants to see Jake in clinic on Monday. SO, I'll drag him kicking and screaming I'm sure. Hell We will both probably be kicking and screaming for that matter.

Jake has REALLY enjoyed being at home and has even started eating pretty good. He's eating a lot of pickles and drinking Mom's famous sweet tea.

Pop & Grama made it back safe & sound to Oklahoma this morning. We sure did enjoy their visit, even though Jake was in-patient the ENTIRE time they were here. At least they got to dye Easter eggs the night before they left. **SEE PHOTOS*

Special Thank you to Pop & Grama for working so hard and helping us while you were here. You both are a true blessing to us and I'm so LUCKY to have wonderful in-laws like you both. I love you guys with ALL MY HEART! Thank you Grama for relieving me at the hospital for much needed SLEEP and sanity! You are the greatest Mother in-law a girl could EVER HAVE!!!

Well, besides laying on the floor and doing "carpet angels" we are having fun whollering each other, enjoying many snuggle sandwiches and getting used to all being together for once again.

Hope you all have a wonderful weekend. Thanks for stopping by and checking in on the Jakester and continuing to pray for us all.

Special prayers for the Nichols family. Harrison's Daddy Mike and Harrison's Uncle Mike were involved in a bad car wreck over the holiday weekend. Both will have a long road for recovery. Please join me in lifting this family up in prayer for much needed strength.

Wednesday, September 3, 2003

WE

ARE

FINALLY

HOME

SWEET

HOME!...TOGETHER...ALL UNDER ONE ROOF!!!!!!!!!!!!!

HOOORAY!!!!!!!!!

I'll update again when I have more news to share.

Thanks for stopping by and checking in on "The Jakester" and saying those prayers.
XO

Tuesday, September 2, 2003

Hello Jake Fans~

Well HELL!
I thought we'd be home by now, but Jake's counts and fevers have gone UP & DOWN for so many days, I can't remember what day is WHAT ANYMORE! GOD HELP MY SON!

No, there's NEVER enough DRAMA in MY BOOK!

Doc came in this morning and stopped all of Jake's meds. I'm not even going to repeat his counts for fear for jinxing him. Do him a favor and stomp your feet loud like me and DEMAND SOME @#$%&*! ACTION from that marrow and Jesus! For the LOVE OF PETE (says GWAMA CINDY) ENOUGH IS ENOUGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Anyway, I'm PRAYING FOR JAKE TO BE DISCHARGED TOMORROW. We will see. He's not had any fevers for three days, so we are all HOPING HOPING HOPING HOPING HOPING HOPING HOPING HOPING HOPING AND HOPING he will be able to come home.

That's all for now, I'll update when I have more news.
XO

Saturday, August 30, 2003

Hello All~

Jake's counts are STILL HAMMERED!!!!!!!!!!!!

We are beyond tired, we are all delerious. Jake is mad at Doc McMahon, and blames him for not being allowed to come home. This morning I asked why he was SO MAD AT DOC MCMAHON? He answered "Doctor McMahon MAKES me stay here all the time"! I cannot reason with Jake at all. He wants to come home, he wants to sleep in HIS bed, he wants out of that PLACE!!!!!!!!!!!!!!!! GOD HELP ME! CANCER @%$#&*! sucks !!!

I tried to explain that Doc McMahon was looking out for Jake's best interest...but he WAS NOT HAVING ANY OF THAT!

Today's labs:
WBC = .2
PLT = 16K
HGB = 9.5

I have NO IDEA when he's getting out! Doc McMahon is very discouraged about his counts and we are just beside oursleves to get home and enjoy each other for once. He cannot go home until his counts are .5 or greater. That could be a few days...or longer....I give up trying to guess. It's all in GOD'S timing.

Thank you's GO OUT to:
Pop & Grama Cindy for being awesome parents, and helping us out so much this week.

JOHNBOUK for being an awesome friend.

Ms. Gina, Harrison & Mike for the TOO COOL TRANSFORMERS!

Chris Boukedes @ Brickhouse for a wonderful dinner.

The nurses on 7T for putting up with all my shrimp and dealing with this mad WOMAN!

And of course the ever abuse receiving Doctor McMahon for always working so hard for Jacob and might I add... cracking the most sarcastic jokes so FREAKING early in the morning. You gotta love the Docs early in the morning......

I'll update when I have more news.
Thanks for stopping by and checking in on Jake and PRAYING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
XO

Thursday, August 28, 2003

Hello Jake Fans~

Jake is in MUCH better spirits today and even got down out of the bed to put the "KYBOSH" on the power ranger punching bag JOHNBOUK brought him a week or so ago. We just love beating the living hell out of that thing. I believe I got a little carried away this morning. I found myself on top of the thing beating the holy SHRIMP out of it.

Yep I SURE DID feel a hell of a lot better and Jake cracked up. So, it served it's purpose right? RIGHT! I walk by it and kick it just for the HELL of it. It's GREAT!!! All hospitals should have punching bags hanging around for everyone who’s hurting like we are to take it out on.

Jake's counts are STILL hammered.
WBC = .2
HGB 6.5
Platelets I don't know, but he had a transfusion yesterday.

We are all fit to be TIED and ready to get the HELL out of the hospital and HOME under one FREAKING ROOF!

Kushner wants Jake to have a CT scan done and see how stable his disease is. ** IF his disease has not budged after this treatment he received 8/4-8/9, then we have decided that we cannot do anymore damage to Jake's quality of life. The chemotherapy his disease needs cannot be supported by his bone marrow. We will decide what to do next based on the CT scan…. which will most likely be un-conventional therapy. There is a WIDE variety and we are researching every possibility.

I don't know when we are scanning him; I'll update you all here and advise when I know what the hell we are going to do to give Jacob a better quality of life than he's having right now. It would be so selfish to keep blasting him with massive amounts of chemotherapy that annihilates his marrow, that just subjects him to numerous infections and extended hospital stays. His marrow cannot keep up with the schedule of chemotherapy his aggressive disease requires.

Please pray for Jake. Our whole family is devastated. There is no cure for his disease.

Tuesday, August 26, 2003

Hello Jake Fans~

Well Happy FREAKING TUESDAY!

Jake was really puny today when I got to the hospital. Grama Cindy stayed the night again with him and he had a few vomiting sessions and the runs came and went with it. I appreciated and VALUE the sleep I received and the time with my spouse, thank you again Grama Cindy.

Daddy is camping out tonight at the hospital with Jake tonight, and I'm at home again for more needed sleep.

Jake's temp got up to around 101.8 today so the dreaded amphiterrison (sp) they call it "AMPITERRIBLE" because it's beyond a HARSH antibiotic. It gives Jake the cold shaking sweats. Just what he needs more suffering.

Today's labs:
WBC = .2
HGB = 7.9
PLT = 20K

Doc is hopeful he's on the rebound and will be going home soon? I'll let you know when we know anything new.

I'm on my knees begging for mercy people. PLEASE don't ever FOR ONE MINUTE EVEN THINK THAT WE AREN'T LEANING HEAVILY ON THE LORD. I'm only human, and I don't expect anyone to understand what we are going through unless you have walked a mile or two down the road we've traveled for three years.

Please join me in prayer in asking the lord for the following:

White's to GROW!
No more fevers
TO COME HOME!
FOR ALL OUR STRENGTH
Peace in our hearts, we are so tired of seeing Jake suffer like this.

Thanks

Monday, August 25, 2003

Hello Jake Fans~

Happy Freaking MONDAY!

Have you ever wanted to crawl in a hole and die? I have wanted to all week LONG. I AM SO SICK OF THIS CANCER DESTROYING MY CHILD’S LIFE. Oh, yeah, I should be thankful. THANKFUL FOR WHAT? Thankful for watching my child suffer, thankful for being the ONE who signs the consent to give him the POISON that makes him SO FREAKING SICK!!!!!!!!!!!!!!!! I feel like I’m just adding fuel to the fire sometimes.

I HATE MYSELF for pushing him so HARD all of the DAMN TIME. I HATE THIS LIFE!!!!!!!!! I HATE WATCHING MY CHILD SUFFER!!!!!!!!!!!!!!!!!!!

I’m tired ….can you tell?

Big FAT hairy DUH……….HUH?

Grama has relieved me again tonight. THANK YOU GOD. I SWEAR THE LORD KNOWS JUST WHEN I’VE HAD ENOUGH!! He sends in the troops. Grama Cindy is the best. Jake put me on a HUGE guilt trip when I went to leave tonight. “OH MOMMY PAAAAAAAAAALLLLLLLLLLLLEEEEEEEEEEEEEEEEEEEEEEEZE DON’T LEAVE ME!! I CAN’T BELIVE YOU ARE DOING THIS TO ME”. How bad did that hurt? REALLY @#BAD!

DAMNIT!

Jake’s WBC is back @ .2 today
His platelets are beat to hell hanging in @ 28K
His HGB is at 8.1

I’m sure blood & clotters are on the horizon.

I just want a somewhat normal life with my husband and my child. For the LONGEST time this afternoon I stared at Jake’s face while he was sleeping. I just kept rubbing his perfectly round little fuzzy head and telling him how sorry I am for such a *&sucky life. I just kept saying over and over how sorry I was.

I am beyond spent mentally and physically. I feel like I have no more happiness inside me left. Like I said, I just want to crawl in a hole and die.

Doc says that if Jake does NOT run anymore fevers over 101.5 in the next 24 hrs I can bring him home. Hell, I was administering triple the meds what they are now after Jake’s transplant BY MYSELF. I know I can handle anything. I just want my baby happy in his house, with his Mommy & Daddy under one roof FOR ONCE!

Hey it’s my page and I’ll vent if I want too...

Thanks for stopping by and reading and praying…and understanding my madness...........................

Sunday, August 24, 2003

Happy freaking Sunday~

Had a nice sleep at home, Thanks to Grama Cindy! I was back at the hospital by 10AM.

Jake walked to the playroom this morning, and I read him a book and he was ready to GO BACK TO THE ROOM! He is weak and tired and CRABBY AS HELL!

Jake's White count was .3 today. A little TEENIE WEENIE step in the right direction...But he still feels like crap. He's started throwing up stomach bile. Nice pretty green stinky stuff. I'm sure it's chemo related now. DAMNIT I HATE WHAT THIS IS DOING TO MY CHILD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'll update when I have more news..Thaks for stopping by and saying those prayers for Jake.

Saturday, August 23, 2003
Hello Jake Fans~

Well let me start off by saying Thank you's to a BUNCH of people:

Thank you JOHNBOUK for always being there for us when we need you. We appreciate you more than you will ever know.

Thank you Jenny & Tomi @ the South Rowan YMCA for always sending really cool stuff to Jake when he's down and lifting those tiny spirits WAY UP! You guys are too sweet.

Thank you Heidi for forcing me to leave to spend time with Brian and GET AWAY from the hospital Thursday night.

Kelle Schriner @ CTC you are a doll! Thank you for the wonderful goodie basket and videos!! I'm so excited you are on the board for the golf tournament.

To my Mother in LAW:
I love you Cynthia Courtney for being a WONDERFUL Mother in-law all these years. How awesome is that to have such great Mother in-law that DRIVES from Oklahoma to stay with your son for the night???...Pretty AWESOME! I HAVE THE GREATEST IN-LAWS ON EARTH!!!!!!!!!!!!! PRAISE GOD!!!!!!!!! POPPY & CINDY ROCK!!

If I left anyone out, I'm sorry...my brain is fried and I'm beyond SPENT right now.

Jake news:
First and foremost: he's still a MONSTER!
WBC STILL FREAKING(.2)
HGB 13 something
Platelets 11,000

Jake received platelets this morning. The nurses at CMC always take such good care of him. It's so funny because they all fight over him when he's in. They all come by and whine about not being able to get him that day. You guys are terrific and we appreciate you all so very much!

Jacob ALWAYS GIVES THEM ALL A RASH OF SHRIMP! (That's Greek for my fav-O-rite curse word) Anyway, he tells them all that "he doesn’t HAVE to listen to ANYONE but MOMMY & DADDY. And he's forever pushing that GREAT BIG FAT HAIRY LINE!! hmmmmmmmmmmmm...GO figure......Wonder where he gets that from?

Anywayzzzzzzzzzzzz, here's the deal:
I think is that he's still reaping the heinous benefits from the Irinotecan & Carboplatin, Doc thinks he has a viral stomach thing? Well, whatever the case.... His blood cultures remain negative and his chest x-rays are fine. His bowel movements are still the same...looks just like pickle juice, sorry folks; I ain't sugar coating it on this page. His fevers are sporadic, he'll be 99.0 and a few hours later he's at 104! His fluid intake is fine, but has been started on TPN. Has no desire to eat anything. This is officially his 25th round of chemotherapy. That just plain sucks.

I've been a raving WITCH this week. My son is sick, my husband is sick therefore he cannot be around Jake at ALL. A sick child, sleep deprivation, and a family being FORCED apart due to uncontrollable circumstances JUST PLAIN SUCKS PEOPLE.

Anyway, I love being able to vent here and I think I do it well. I want to thank Caringbridge for allowing thousands of people to connect...VENT...across the globe totally FREE! And that my friend is a big fat hairy PLUS!

Thanks for stopping by and checking in on the "Jakester"

Prayers for the following are needed:

NO MORE FEVERS!

WHITE BLOOD CELLS TO COME IN!

TO GET TO GO HOME!!

NO MORE DIHARREA!

AN APPETITE!

Bless you all, we appreciate you all for stopping by and checking in and SAYING THE PRAYERS FOR JAKE!!

PS:
A big praise to the lord for Morgan Barnes being No evidence of disease!!!! Please stop by "Princess Morgan's site" and leave a PRAISE THE LORD AND MSKCC!!!or TWO!!!
XO

PSS:Please do our family OR ANY FAMILY FIGHTING THIS WITCH OF A DISEASE a favor and go to the link above and SIGN the petition for a Childhood Cancer Awareness Postage Stamp

Friday, August 22, 2003 8:40 AM CDT

Jakes white count is still hammered, only 200. He still has the runs, but the doc is attributing it to some kind of stomach virus. Normally Jake rebounds around 18 – 21 days after chemo so hopefully he will start feeling better soon.

The Courtney family is looking forward to a long visit from POP and Cindi, they should arrive this weekend.

Because of the low white count Jake is not allowed visitors.

I’ll keep you updated as I hear any news.

As always please keep Jake in your thoughts and prayers.

Auntie Pat

Please do our family OR ANY FAMILY FIGHTING THIS WITCH OF A DISEASE a favor and go to the link above and SIGN the petition for a Childhood Cancer Awareness Postage Stamp

Wednesday, August 20, 2003 9:37 AM CDT

Jake spiked another fever around 4:00 yesterday. His white count dropped from 600 to 200. His cultures are still negative and he is getting blood. His appetite is still pretty low but his fluid intake is good. He still has a bit of diarrhea but Chanda thinks that might be from the antibiotics. He is still ornery as ever and giving Chanda all the grief he can.

Because of the low white count Jake is not allowed visitors.

I’ll keep you updated as I hear any news.

As always please keep Jake in your thoughts and prayers.

Please do our family OR ANY FAMILY FIGHTING THIS WITCH OF A DISEASE a favor and go to the link above and SIGN the petition for a Childhood Cancer Awareness Postage Stamp

Tuesday, August 19, 2003 10:36 AM CDT

As you all are aware, Jake is back in the hospital. He keeps spiking a fever with sporadic bouts of Diarrhea. His blood cultures are negative and his white count is 500. Dr. McMahon thinks he might have a stomach virus, so he wants to keep them there for a couple of days.

I’ll keep you updated as I hear from Chanda.

As always please keep Jake in your thoughts and prayers.

Auntie Pat

Please do our family OR ANY FAMILY FIGHTING THIS WITCH OF A DISEASE a favor and go to the link above and SIGN the petition for a Childhood Cancer Awareness Postage Stamp.

Tuesday, August 19, 2003 10:35 AM CDT

Monday, August 18, 2003

DAMNIT!!!!!!!!!!!

Packing a bag, heading in-patient.

Jake's temp this morning was 101.7

Still has the runs, but no more throwing up.

DAMNIT DAMNIT DAMNIT DAMNIT!!!!!!!!!!!!!!!!!!!!!

I'm beyond trying to remain sane.

Please do our family OR ANY FAMILY FIGHTING THIS WITCH OF A DISEASE a favor and go to the link above and SIGN the petition for a Childhood Cancer Awareness Postage Stamp.

Thanks...

Sunday, August 17, 2003

Hey Jake Fans~

Jake's a lot on the puny side right now with wretched diarrhea from hell and one vomit session this morning.

We need prayers from everyone for his strength and that NO fevers or hospital admission is around the corner for him.

Jake's due for labs in the AM by home health, so I'm hoping AND PRAYING that we will remain home and allow us both to catch a second, third & fourth wind before anymore hospital duty is pulled.

Thank you Grama Brenda & Grampa Dan for a wonderful visit and all your help. We love you guys & hope to see you again soon.

Thanks for stopping by and checking in on Jake and continuing to say prayers.

Friday, August 15, 2003

Helloooooooooooooooooooooooooooo Jake Fanz!
How are ya?

We are going CRAZY, but that's beside the POINT!

Can anyone STOP THE MADNESS?

Well..............Grama Brenda & Grampa Dan are up from Georgia for a few days AND are doing a GRREEAATT JOB (thank you LORD...JESUS!) of it by the way... We are trying to enjoy their company, but Jake had to go into the hospital today fo BLOOD & PLATELETS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It turned out to be a LONNNNNNNG DAY!

Wednesday's cbc goes something like this:

WBC = 600 (.6)

HGB = 7.5

PLT= 19K

ANC = a WHOPPING 180 Whew!

Today. Jake's doing well and and really enjoying BEING AT HOME FOR A CHANGE! Did I mention that the playset is a HUGE hit still! I love it when he says..."Hey Mommy...let's go out and SWING!iT'S awesome TO JUST WALK OUTSIDE AND SWING WITH THE LOVE OF MY LIFE AND WATCH THE SMILE ON HIS BEAUTIFUL FACE! Thank you all again!

WELL..HELL!!!...NOTHING moves as fast as I want it to when I'm home! What's up with THAT CRAP?????!!!!!!!!!!!!!! GEEEEEEEEEEEEEEEZZZZZZZZZZZZZZZZZZZZZZ LOUISE!

ALRIGHT WHAT THE HELL AM I RAMBLING ABOUT NOWWWWW?!!?????

When we where finished at the hospital tonight, I about paved a NEW road to my house JUST trying to get home! NO ONE would get the hell out of my way! (yes I think I'm past the point of the straight jacket thang here.....)Everywhere I turned, it seemed everyone IN FRONT OF ME was just taking thier FREAKING time getting to where they were going! UGH!

Jake got on to me for calling everyone IDIOTS! (I apologise in advance if I was the car up YOUR REAR giving you the Chanda special ("you're #1 signal).....ANYWAY, the whole point to this rant is that the next time you have some crazy woman or man on your butt in traffic and you think you're STRESSED OUT remember THIS journal entry and think of the ever SO FREAKING PSHYCOTIC CHANDA AND how BAD she needed to get HOME SWEET HOME FOR A LITTLE FREAKING ZEN! But WUZ DENIED because people thought she was just being obnoxious on the road!

Lord help me and give me strength! Please GOD continue to bless us from head to toe and remember that extra special blessing for our sanity...................................

I'll update later when I have the energy!
Thank for stopping by and saying the prayers for our little GIANT!

Monday, August 11, 2003 **MORE NEW PHOTOS ADDED TODAY!!!!*****

Hello Jake Fans~

I’ll have you know that our drive home was great! We enjoyed every 11 hours of it all together as a family. We made it HOME SWEET HOME safe and sound yesterday around 2PM.

Saturday we got to clinic (urgent care) around 12:30PM and finished up his last day of Irinotecan around 3:30PM. By the way...Jake charmed all the nurses BIGTIME once again. He’s just like his Daddy ladies, a complete charmer…lord help me.

We stopped over for the night in West Virginia. Jake was not happy at all about having to stop, but we needed some freaking shut eye! I woke the boys up around 7AM and we were on the road again by 8:30AM.

We arrived home to find not ONE but TWO surprises waiting for us. There was a big sign in our front yard that says WELCOME HOME JAKE & CHANDA! From our GODSTOCK friends…And there was a brand new swing set being assembled by our friends Chris and Jamie in the back yard. I don’t think they expected us home so soon. I completely lost it….

SINCE NO ONE WILL OWN UP TO WHO IS ALL INVOLVED IN THE WONDERFUL PLAY-SET...THE FOLLOWING THANK YOU IS FOR EVERYONE WHO IS RESPONSIBLE FOR JAKE’S NEW PLAYGROUND IN OUR BACK YARD….

Brian and I are completely taken back by your incredible amount of generosity. Your thoughtfulness and kindness is so very much appreciated, and very overwhelming. I only wish you ALL could have seen his little smiling face when he was swinging and climbing aroundon it. It’s a priceless smile that I'll never be able to expalin in words. We will never be able to thank you enough.

Thank you Chris and Jamie for working so hard this weekend putting together to play set for Jake to enjoy, you guys are so sweet!

Doc McMahon wants to see Jake like Wednesday. Jake starts GCSF shots tomorrow night, not looking forward to that, but we are so happy to be at home all under OUR roof…together.

What a wonderful welcome home! Thank you friends! It’s so good to be home.

Friday, August 8, 2003

Hello Jake Fans~

Daddy made it SAFE & SOUND last night around 12AM. YAY! We were all up rough housing until about 2AM. Yep, I said to hell with the alarm once again and we all slept till around 9AM. Jake and I headed into clinic and let Daddy sleep and rest up. We were back at the RMH around 12PM today just to find Daddy walking out to meet us. Jake is completely DADDY CRAZY! I kinda like him myself....

Round #4 (well actually I believe this counts as officialy the 23rd round of chemotherapy Jacob has HAD) Not that I'm counting or anything...)is over. One more to go. Jake will have this infusion in Urgent Care, and then we are hitting the road and headin south-bound. Don't know if we are driving all the way thru or stopping over, just depends on how the Jakester feels.

His appetite and ornery levels have NOT changed in the least BIT. I anticipate more orneriness everyday actually. Today he balled up his fist at me and hollared "DO YOU WANT A PEICE OF ME?" all this in front of NP Esther. What the hell? I only won tic-tac-toe for PETE'S SAKE! So, I had to let him win to get back in HIS GOOD GRACES!

I'll update once we are home and settled in. Thanks for all the prayers and support.

Thursday, August 7, 2003

Hello Jake Fans~

Well today's chemo went fine again. I said to hell with the alarm this morning and just decided to see how late I would..could sleep. Never fails....I'm up at 7AM no matter what. Must be that little kid pattern that I have followed for the past 4 1/2 years. Anyway, I've noticed that Jake is getting more & MORE difficult to get up and GET GOING in the AM's! What's up with that CRAP!?!?!?! This morning I found his favorite show (this week) I think it's called PEKALA (SP?) anyway, it involves square headed animals like penguins and such and he popped right up and started watching it. I see the mehod to his madness now, this little SKUNK!

After that, he decided he wanted to watch Power Rangers, so we did. Then we headed to clinic for the 3rd round of Irinotecan. So far so good. Still no problems. Anybody got some wood to knock on?

The appetite & ornery level is still pretty high, so, no complaints. After treatment he decided he wanted to go to the park & swing. I gotta get this kid a swing set, cause the smile it brings to his face is AMAZING! That will be my #1 priority of fun things that I can acomplish!

Let's see, yesterday he wanted to swing as well, but it was raining. So, he threw a COURTNEY fit and I walked him down to the park in the pouring rain and we stayed dry, but he refused to let me leave because he wanted to swing. So, once the lightening started I thought it would be the good motherly thing to do and leave at that point. Jake was highly pissed at this point, there's just NO REASONING WITH A 4 1/2 YEAR OLD! UGHUGHUGHUGHUGHUGH!!!!!!!!!!!!!!!!!

Last night Allison and I ordered from Dallas BBQ, it's AWESOME and a friend of mine introduced it to me (THANKS JUDY) anyway, dinner was good and then we played bingo. Well, I suck BIGTIME at bingo, so after Debbie & Allison won their kids a prize, Debbie won Jake this huge piano/flashing,lights/microphone/thing that makes a hellacious amount of noise I'm sure, but WHO CARES! (Thanks Debbie)

Other than that, I'm still completely batty, but really anxious to see my hubby. He's driving up today from NC, YIPPIE, YAHOO, YAY!!!! Please lift a little prayer up to the almighty for Brian. I'm praying that he makes it up with ZERO/ZILCHO problems and does not have to pull some poor New Yorker out of their car and beat the living hell out of them.

That's about all I've got for now. Thanks for stopping by and checking in on the Jakester.

Wednesday, August 6, 2003

Hello Jake Fans~

Today's chemo went fine. Jake's energy level and appetite are doing fine. No side effects yet and I'm only praying he catches a break this round.

Today is a little better for me mentally. Yes, I do believe I'm stepping into the TWI-LIGHT ZONE alot here lately. It'd just like to thank the man of my dreams, the love of my life for putting up with such a crazy woman for all these years. Brian you never cease to amaze me with how deep your love is for me.

Little man is trooping right along. Talk about our little HERO!!! BUT HE IS Still talking about "The plankton from the bottom of the sea" (AKA BETA-GLUCAN) This really BITES because he hated having to take it, but does NOT understand why he can't take it anymore? I've tried to explain it but, he still isn't grasping the reasoning. Even though we all know he's 4.5 going on 40 right?

Well, last night Jake played so hard with his new little buddy Andrew, we didn't get back to our room until about 10:30PM. I opted NOT to take the double decker bus tour because there wasn't a bathroom. So, we hung out here he pigged out and watched the cartoon network yay..

I've tried to pull myself together today, better than yesterday. It's really hard for me to know that Jake's disease is so damn stubborn and he's become chemo dependant to control his disease. Today while in the waiting room I started to compile a list of the reality of cancer (in my opinion). THIS IS MY VIEW ONLY..

PLEASE...If you are sensitive STOP READING here and check back another day. If you are prepared to read how broken hearted we are buckle up cause it's coming out on today's journal entry....

The reality of how much cancer SUCKSin my opinion:

1.)Waking up every morning and realizing it's not a nightmare that your child is dying from a hellacious disease and there's NOT A DAMN THING ANYONE CAN DO ABOUT IT..THERE IS NO CURE...

2.)Resenting the fact that Brian has to work and is missing some of the most precious moments of Jake's life.

3.)Being jealous of other children doing well with their treatments.

4.)Getting bitter and more bitter each day I see my child suffer.

5).Wanting to SCREAM at the top of my lungs at total strangers for NOT taking better care of their HEALTHY children.

6).Making plans to go on a "family" trip for the past 3 years and the cancer always stomping all over our plans in one way or another.

7).Trying to explain to friends & family to STOP apologizing for any set back Jake has, and trying NOT to hurt anyones feelings. It's not pitty we need...IT'S PRAYER for strength!

8).Trying NOT to visualize Jake's funeral over and over in my head.

9).Having to discuss the "what if's" ALL THE DAMN TIME.

10).Having to write these heart wrenching journals.

That's all I have for today.

Thank you all for continuing to pray for Jake.
XO

Tuesday, August 5, 2003
Hello Jake Fans~

C A N C E R FREAKING(FOR THE LACK OF MY FAVORITE "F-BOMB"...but great substitute word for our sensitive readers....) S U C K S !!!!!!!!

Jake started Irinotecan and Carboplatin today. 1 day of Carboplatin and 5 of "The butt blaster from hell". Should be an eventful week.

As far as I know we are driving home on Saturday after his last treatment here. Daddy is coming to get us. We have WAY TOO MUCH CRAP HERE to mess with shipping it or pissing some airline off by trying to get it all home. We'd rather spend the time together away from ANYWHERE you know....kind of like a mini vacation.

We are going on a tour of the city in a double decker tonight with the kids of the RMH hopefully it will be fun?

Just so you all know, we are taking three steps back, to take three more forward. This is the reality of a resistant cancer........

I'll update later, thanks for your prayers and support.
XO

PS
Daddy we love you bigger than a dinosaur!

PSS
Allison,
Thanks for dinner last night and being a great friend.

Monday, August 4, 2003

Another update:
Jake's starting chemo here tomorrow and finishing up on Saturday.We will be flying home shortly after. I'll update with more news when I have it.

Thanks for the prayers and support.

Hello Folks~

Sorry for the late update, and this one is a VERY CRAPPY UPDATE

No problem with the HAMA, still negative which is a good thing, but apparently there is SLIGHT disease progression in ONE lymph area. Remember when MSKCC wanted to remove these in January but couldn't because of the RSV virus from hell?? Well it's still a problem apparently.

Is there a word I can write to you to describe how Brian and I feel besides devastation, well how about total devastation? OR BETTER YET ANOTHER BIG FAT HAIRY SUCKER PUNCH FROM NB HELL MAYBE?

What does this all mean? Well here it is briefl:

Options are:
Surgery, which Doc Kushner is speaking to Doc LaQuaglia (NB guru "he who hides his angel wings under his white coat" surgeon)

Being sent home for more chemo?

Or starting the Beta-Glucan anyway despite the small progression in that area.

YOOOOURRRRRR GUESS IS AS GOOD AS MINE, Because see we are in a holding pattern right now until theydecide what to do. I could NOT get myself together enough to leave the bed area this morning, then the nurse asked us to leave because she need the bed for another child. Thank you Kim, Taylor & Taylor's Grama for letting us share YOUR already small area until I could stop crying. I appreciate your sweet kindness this morning. And I'm so sorry you had to see me like that.

I couldn't wait for the news in clinic because it's Monday...ANDMonday's are from hell there, it's so over crowded, and you are a spectacle when you are crying so everyone is looking at you (or so I felt anyway) Jake was highly pissed because he had to leave his bed and believe it or not, wanted to know why he was not getting the plankton from the bottom of the sea? I couldn't even answer him, so that pissed him off even more.

So, I'm writing you all to let you all know what's going on. When I know more I'll post. All I'm asking for is some powerful prayers from anybody and everybody that MSKCC will find something to stop this MONSTER from continuing to grow and let my baby LIVE!

I'll update when I have news to share, and if I can't get to a computer here... Auntie Pat will update for me I'm sure.

Thanks for stopping by and checking in on The "Jakester" and saying those prayers..

Friday, August 1, 2003 2:39 PM CDT
JAKE'S HAMA NEGATIVE AND That's a BIG FAT plus!

LONG DAY so far, we've been up since 3AM. I wanted to make sure he got to eat. He struggled with me to get up but FINALLY he did and ate some corn pops and drank some juice. He was SUCH a good boy for both scans, I can't praise him enough! For all he goes through he's really a good boy.

I'll find out if there's any NEW disease if I only receive a call that they found something significantly drastic from the last scans. Otherwise we are to report to clinic at the butt-crack of dawn Monday morning for ROUND # 2 of Beta-Glucan( AS JAKE SAYS "YUCKY PLANKTON FROM THE BOTTOM OF THE SEA")AND 3F8's.

We are finally back at the RMH and are un-winding from the day....or trying to that is. The weather has turned humid and we are hoping to get outside this weekend to to some fun things planned this weekend, I'll update when I have more news. Thank you all for the prayers, we felt them and we all know prayer is a beautiful and powerful THANG!

XO

Thursday **AFTERNOON UPDATE**, July 31, 2003

Well OK here's the deal, the CT scan schedules are SO backed up that they sneaked Jake in for an early AM CT. Which means this. He CAN drink his contrast with apple juice or whatever clear juice liquid, BUT he has to finish it BEFORE 8AM and then his FREAKING PET injection isn't until 12PM. SO, he doesn't get to eat or DRINK anything but WATER until after the PET scan which isn't until 1:15PM. LORD HELP US BOTH! I'm going to try and remove Jake from the clinic and get him outside and we will hopefully play and aviod the whole drinking/eating thing. Thanks for the prayers for tomorrow in ADVANCE!

Hello Jake Fans~

Well this week in the city has been just B E A U T I F U L! Tuesday of course we spent the whole day with our dear friend "JOHNBOUK"(as Jake calls him) we all had an incredible day enjoying the fresh air walking around the city and soaking in the sunshine.

There's a park right accross the street from MSKCC and we hung out there for an hour or so. Jake was charging everyone money to ride the "Magic School Bus" on the jungle gym. He cracks me up, JOhn and I gladly obliged him. I think he wound up with freaking buck or two the little skunk! Jake also LOVES to swing, and we pushed him on that swing until he was green! Hey, he won't get off until he's done so....if turning green is what it takes then so be it.

By the way, Thank you JOHNBOUK for always having such a huge giving and loving heart and accepting me for the way I am (yes I'm rolling my eyes) and being such a wonderful friend to our little family. We love you and appreciate you, GODSTOCK and your family more than you guys will ever know.

Well I got a call this morning that Jake's CT & PET will be tomorrow AM. Looks like the CT will be first, but there's a stinking catch. He has to have a PET scan injection first, then he has to drink his contrast with WATER. This is where I need your prayers. See Jake DOES NOT AND WILL NOT DRINK WATER! SO this should be fun. Why do I have to mix the contrast for the CT scan with water you ask? Well the PET scan is gluclose sensitive, that means NOTHING but water after you receive the injection. SOOOOOOOOOOOOOOOOOOO, Jake should be not just pissed off, but HIGHLY pissed off because (A) he has to drink water mixed with contrast and (B) because he can't have anything but water until the PET scan is complete. YAY, I'm so damn excited I can't hardly see straight.

By the way we had a very LOOOOOOOONNNNNNNNNNNNNGGGGGGGGGG discussion this morning about the Beta Glucan. Here's a funny one for all you SPONGEBOB fans. Jacob keeps asking me when he has to take the Beta Glucan again? I said well, "hopefully we get to start again on Monday morning" He said "YUCK!! That stuff tastes like PLANKTON FROM THE BOTTOM OF THE OCEAN.....YOU KNOW THAT GREEN SLIMEY YUCKY STUFF? YOU KNOW MOM...LIKE PLANKTON!!" Lord help me was my response. He's 4.5 years old and he can express himself so well. Well, you know he comes by it SO honestly and I'm VERY proud to be Jacob's Mommy no matter how dramatic he is, I wouldn't have it any other way at this point. Except of course if I had one wish I'd wish there was no cancer at all anywhere in the world. That's a BIG FAT HAIRY DUH!

Other than that we've been passing the time painting at the little shop of pottery and hanging out at the park and of course very much enjoying the company of Miss Princess Morgan Barnes and her wonderful Mommy Allison. Allison, I'm so glad we are friends and we have our little moments to talk. I enjoy your friendship very much. Not to mention Morgan and Jake are A TRIP together! Thank you!

Thanks for checking in and please whisper a little prayer for Jake tonight. I hold no punches when I ask the big man for favors, so do me a favor and send up an easy morning prayer AND getting that contrast with WATER down and of course that there is NO disease progression so that Jake can continue with this trial.

XO

PS
Daddy we love you BIGGER THAN A DINOSAUR!!!BIGGER THAN THE UNIVERSE!!!BIGGER THAN THE WHOLE WORLD!!!!!!!!!!!

PSS
THANK YOU TO: Samantha's Aunt Cathy...here's a message she left in Jake's book. That was so thoughtful of you Cathy and I cannot tell you how much that means to us and others just like me, that people like you care enough and continue to work so hard to help folks like us and our children....

"My prayers are with you all every day. I donated platelets in Jake's honor this past weekend. I managed 82 minutes for the double donation. I realize that nothing compare to what you guys go through."
Samantha's Aunt Cathy www.hopefoemarrow.org
lamarreca@irctt.com

Tuesday, July 29, 2003
HEEEEEEEELLLLLLLLLLLLOOOOOOOOOOOOO Jake Fans !

How the heck are ya? Oh we are fine… Just fine… I think my head is still spinning a bit, but we are fine. We had 9 wonderfully TOO DAGGONE SHORT days at home with Daddy and moved into our house, which we LOVE beyond words! And on that note I'm going to list all we appreciate VERY VERY MUCH FOR ALL YOUR HELP IN GETTING US MOVED WITH THE GREATEST OF EASE!!

BIG FAT THANK YOUS GO OUT TO THE FOLLOWING FANTASTICLY WONDERFUL KIND FRIENDS:

MISS BEV & MR.BILL, MAX & MISTY
AUNT JAMIE
UNCLE JOSH
AUNTIE PAT
MIKE
JAMIE
KYLE
NEVELLE
CHRIS, LISA & KAITLYN
"LYBIA" (AS JAKE CALLS HER) & ADAM
AND the anonymous person who left the surprise in our cabinet (how thoughtful of you)

Thank you all for your hard work, sweat and the incredibly generous amount of TIME you donated by helping us. Brian and I will NEVER be able to thank you all enough.

Well with that said I'll update that Jake and I have safely arrived BACK in NYC, thanks to the Corporate Angel flight. Jake was pretty bent out of shape cause we had to leave Daddy AGAIN, but he quickly got over it when he met the folks on the flight. Jake was his usual self, you know he JUST HAD to TAKE is new Power Ranger Ninja Storm Sword with him on the flight. SO, of course he winded up beating the hell out of a "Ed" the gentleman that controls about 20f Bank of America (way to go kid, beat up all the nice folks that are trying to help us...)… They cut up back and forth the whole flight, and they played the entire flight together. GREAT FLIGHT, AWESOME FOLKS AT BOA!

Well this week is testing week. SO far he's had HAMA testing this morning (just labs) I'll find out what the results are sometime this week. Also he's scheduled for a PET Friday and there is a mix up on the CT scan this week so we are on standby waiting for the DOC'S to call with a time on that.

All we need are prayers for the following:
HAMA Negative
NO disease progression
Strength
Peace
And much desired sanity for Mommy & Daddy

Other than that, our dearest friend JOHNBOUK is here in the city visiting us and we are having a BLAST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(PS JOHNBOUK FORGOT HIS SHOES AND HAD TO CATCH THE FERRY BOAT FROM JERSEY TO NYC AND A CAB WITH BARE FEET!!! HA!!HA!! Don't worry folks, I went and met him on the corner with flip flops!!!!!!!!!!!!!!Silly old JOHNBOUK Ah, we love him though!!!!!!!!!!!!!!!!!

I'll update when I have more news. DADDY WE MISS YOU AND LOVE YOU VERY VERY MUCH! It hurts, but it’s not forever and Jake and I are always thinking about you and the good times we have together as a family in our favorite snuggle sandwich on the couch watching SPONGEBOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

XXOO

Wednesday, July 23, 2003
Hey Y'all~

We are ALL doing well, and Jake's appetite is picking up a bit. He decided he wanted chocolate chip cookies & milk for breakfast. MMMmmmmmmmmmm MMMmmmmmmmmmmmmmmmm the breakfast of champions! Then he decided he wanted an apple. Hey, whatever he wants to EAT is FINE with me, especially if there's fruit involved. Hey I've been known to jump FOR MUCH joy over Nacho Cheese Doritos folks....

Other than than we are packing up and ready to MOVE! Jake was ready yesterday. I'm trying to stay somewhat sane. I know you are all trying to visualize that right?

Jake and Daddy went to see Finding Nemo and had a blast. They look forward to their "Jake&Daddy Days".

I however was numb and felt lost without them, so I decided to pamper myself and got a pedicure. Pedicure's and messages should be in a prescription format for us parents.

THE LORD IS LOOKING OUT FOR ME cause I HAVE been fortunate enough to receive TWO FREE massages at the RMH (The Swedish Institute comes to the RMH once a month and I jumped all over that!) The guy said my back & shoulders were like massaging gravel. I thought that was a pretty cool anaolgy...huh?

ANYWAY....when my pedicure was finished I refused to get out of the vibrating/heated chair. In fact I told them they'd have to pry me out of it. I wasn't going anywhere for a while! I guess they felt sorry for me or they could possibly have been very very scared, because I sat there for about 30 minutes and nodded off, and I do believe that there may have been some drool involved.... I'm putting one of those damn chairs and a PADDED ROOM on my list to SANTA THIS YEAR!

So anyway, like I said I'm just trying to stay relaxed and not spaz out too much.

I asked Tina to come draw a CBC on Jake yesterday just to check and make sure his counts were ok. And they were pretty darn decent:
WBC=5.1
HGB=10.1
PLT=105K
ANC=1428

Thanks Tina & Adrienne!! We love y'all!

Alright I've rambled enough....

Thanks for stopping by and checking in on "The Jakester" and continuing to pray for him.
XO
I'll update again when I have more news...

Sunday, July 20, 2003
Hello Jake Fans~

We are HOME SWEET HOME!!!!! YAY!!!!!!!!!!!!!!!

Jake and I flew out of Teterboro, NJ via a wonderful Corporate Angel Flight yesterday. We flew to Myrtle Beach to drop a few folks off and then would you believe that they made a special stop just to drop us off in Concord? They didn’t want Daddy to have to drive to Wilkesboro to pick us up… I couldn’t believe it!! They dropped us off and we were home in 15 minutes!! SOME PRETTY AWESOME FOLKS LIVE IN THIS WORLD I TELL YA!!

Jacob always enjoys flying and is a very good traveler for the most part. The flight was full and of course Jake had all the guys on the plane cracking up about “Is this the way to the north pole” and how “Mother nature does some beautiful work on the clouds up this high”. Where does he get this stuff?

Anyway after settling in, we all plopped down on the sofa and proceeded to watch MILO & OTIS. YAY like I hadn’t had enough of that video while in NY. But, you know what? WE WERE FINALLY HOME and I just didn’t care at that point.

I looked at Jacob last night and it struck me how bad he looked. I have never seen him look like this before. His eyes had huge circles underneath and his eyes look so sunken in. He’s lost about 4lbs. I have always thought he looked really good until last night. I lost it….

We met A LOT of really neat people while we were in NYC. I have placed new photos on the page. Thoughts and prayers are with Harrison, Taylor, Laura, Trey, and Bryce.

I’ll update again when I have more news. Thanks for stopping by and checking in on The Jakester.
XO

Friday the 18th....It's OVER for this round
Today's pain was horrific. His hives were the worst thus far. Today was just as severe as the very first day. His pain lasted about 45 agonizing minutes. My nerves are BEYOND SHOT. WE ARE SO PAST BEING READY TO GO HOME AND SEE DADDY.

We are hopefully going to an end of a hellacious week party at some new friends house tonight. I'll have photos and I'll update once we are home.

Thanks for stopping by and checking in on Jake.
XO

Thursday, July 17, 2003

Alright, well apparently my spouse has the MOVE under control. I have been advised to not worry about it. Me.....worry? About what? I have no worries right? NOT! I'm trying so hard to remain sane. I am spent I tell ya. Jake slept from 2PM yesterday until 10:30PM last night. He stayed up until 1AM and then decided he was ready to go back to sleep. I just kept nodding off. This morning I felt like I'd been hit by a TRUCK. I cannot imagine how Jake feels. He says he feels like an old man. Today's pain seemed alot lighter and only lasted about 30 minutes. He did have hives pretty bad though.

One more day and then he gets a BREAK!!

That's all I've got for now. THanks for stopping by and checking in on Jake and continuing to pray.
XO

Wednesday, July 16, 2003
Hello Jake Fans~

We made it to clinic today around 7:45AM Jake was started on his antibody treatment around 9:4AM.The pain and hives hit about 30 minutes later and lasted about 40 minutes. I have no other words on this subject...

Brian and I spoke with Doc Kushner on Tuesday and he just beamed from ear to ear. He is SO pleased with Jake and his response to all of his latest treatments. He cannot believe Jake has endured what he has these past few years and looks as good as he does. I wish I knew what was going on in his little body.

We are going to be finished with antibodies on Friday the 18th and catching a flight out probably Saturday. We will be home for a few days long enough to pack up the apartment and move into our HOUSE! Jake's excited about moving and will probably aquire a GARANIMAL of some sort very soon. LORD HELP ME!

**If you didn't get an email from me with our new address, and you want it. Email me and I'll send it to ya. I believe the phone # will stay the same...

It's been an EXHAUSTING month up here, but we have to do what we HAVE TO DO. Jacob is our hero, so brave and strong. I pray that God continues to bless us everyday with that and more.

Thanks for stopping by and checking in on us and praying for Jake.

I'll update when we get home. Thanks AUNTIE PAT FOR KEEPING ALL OF JAKE'S FOLLOWERS INFORMED! WE LOVE YA!
XO

Monday, July 14, 2003 7:52 PM CDT
Jake had a pretty good day today, He had some pain but less than Friday. He only had 1 shot of Dilotted before the treatment and 1 dose of morphine after. The after pain that Jake has seems to be in his arms, hands and legs. He was ready to go today, he wanted to go to the Pokemon Center, so they all headed out for the afternoon. Chanda and Brian both had massages today, There is a traveling van that goes around to different places, they enjoyed it very much.

I will update again tomorrow after I speak to Chanda.

Please pray for Jake to endure the pain associated with these treatments.

Auntie Pat

Monday, July 14, 2003
Hello Jake Fans~

Well our weekend was FANTASTIC! I couldn't have ordered up BETTER WEATHER and the plus was that the city was southernly SLOW. Yeah...that's what I said "Southernly SLOW". During the week the locals will run you down in the streets, but here on the weekend you are telling them to get the hell outta YOUR WAY!

So, as I was saying, the weekend was AWESOME! The Courtney's received MUCH NEEDED FRESH AIR ALL WEEKEND!!!

Saturday we hung out at Central Park, Jake had his whole face painted like a PINK kitty cat. Then he made me wash it off after ten minutes because it ITCHED!!!! UGH!!! Whatever, he enjoyed it for ten minutes right? AND I GOT PICTURES, so it was well worth it!

We watched the sail boat races and played on the playground afterward. Then we decided to go see Sinbad, which was really good. Jake really liked that movie.

Sunday Morning Daddy, Jake & I walked from the RMH (east side) to The Children's Museum of Manhattan (west side). The walk was very nice and very needed since all we ever seem to do is sit sit SIT ON OUR BEHINDS!!!!

The Museum is all hands on and very interactive and Jake had a blast. After that we went to lunch on the west side at an outside cafe. Lunch was great and we had more energy to burn so we headed south for Times Square for some more sight seeing.

Last night we al crashed and burned. Jake didn't flinch a muscle, neither did we. This morning we had to be at clinic early for treatment. I can't explain to anyone reading this how these treatments are. I have no words. I think it's better to let Auntie Pat update you all the rest of the week.

We are faithfully praying that Jake continues to be brave and have the strength he needs to continue these treatmemts for however long he's able. Meaning HAMA (-) or (+) . We are grateful for everyday, whatever it takes, whatever road we travel, we are grateful for everyone who has helped us along the way and every single day with our son.

Thanks for stopping by and checking in on the "Jakester".

XO

Friday, July 11, 2003 3:26 PM CDT
Jake had another good night last night. He did not require any morphine after the treatments like he had the previous days. Round 5 was a little bit better than the other 4 rounds. The pain did not seem as severe. He even wanted to walk for the first time this week. Brian is there and the 3 of them are going to spend some time together in the city this weekend before starting another week of treatments.

Chanda will call me sometime over the weekend and I will update again.

Please pray for Jake to have the strength to endure the next week of treatments.

Auntie Pat

Thursday, July 10, 2003 7:43 PM CDT
Jake had a good night last night. He slept until 8:30pm, and then was awake until 4:00am. Chanda however did not get much sleep. They were back at clinic at 8:00am for round 4 of the antibody treatments. The pain was just as bad as yesterday but was concentrated on his groin area. The hives are worse; they look like marbles under his skin. They are on his forehead, the back of his head and his upper body. His blood pressure dropped today during treatment so they had to give him additional fluids to bring it back up. He had the Dilotted again as usual to help ease the pain.

Jake is very excited to have his dad coming back today, he arrived around 5:00.

The pain Jake is experiencing is a good sign, it means the antibodies are working and doing their stuff. Please pray for Jake to endure the pain and for the treatments to do what they are supposed to.

As Chanda says:
CANCER !@#$&*% SUCKS!!!!!

I’ll update again tomorrow.

Auntie Pat

Wednesday, July 9, 2003 12:25 AM CDT
Jake has finished up round 3 of the Antibodies, only 2 more this week then they get the weekend off. Last night Jake had pain till around 9:00, Chanda kept him comfortable with the morphine. Today the pain was the same again only this time it was in his stomach. It seems to move around to different part of his body. The hives returned, this time on his head, they make bumps under the skin. Chanda says he looks like someone beat him with a bat. They are still giving him Dilotted so he’s high as a kite when he leaves clinic. Jake seemed in good spirits, he tried to pick up a cute blonde at the corner deli, he invited her to go home with him and watch a movie. He talks up a storm to everyone as long as he is medicated, he jabbered the entire time on was on the phone with Chanda.

They have changed rooms from 707 to 1005 at the Ronald McDonald house. I believe it is a bigger room.

As always, keep Jake in your prayers. Although the pain is awful it is a good thing. In order for the antibodies to work the pain is necessary. Please pray for Jake to have the strength to endure the pain.

Per Chanda..

Cancer @#*>&@$ SUCKS !!!!

Update again soon
Auntie Pat

Tuesday, July 8, 2003 2:41 PM CDT
Jake had round 2 of the Antibody treatment today; it was just as bad as yesterday. The pain was the same, but was in different areas. Today the pain was in his neck, back and legs. He told Chanda that he felt like he was on fire. He received Dilotted before and 2 more times after the treatment. The nurse told Chanda that Jake seems to be experiencing the same pain as the older kids. What that means, she does not know. He also has broken out in hives all over his upper body. His upper lip looks like someone punched him. Chanda is keeping him comfortable with Benedryl and morphine.

Please keep Jake in your prayers during these awful treatments.

Auntie Pat

Monday, July 7, 2003 7:07 PM CDT
Update: Chanda will not be able to update this week so you’ll be hearing from Auntie Pat when Chanda calls to give me an update.

Jake started his Antibody treatment today. It was beyond horrific, the pain was atrocious. The pain is in the nerve endings of his extremities. He received a lot of pain medication after the treatment, went back to the Ronald McDonald house and took a nap. When he woke up from his nap, the pain medication had worn off and he was in intense pain in his fingers, toes, arms and legs. Chanda actually ran 6 blocks back to the hospital with Jake so he could get more pain medication. They gave him an IV push of Dilotted(?) and gave Chanda some morphine to give him orally. Jake will receive the Antibodies every day till Friday; they have the weekend off and start again on Monday for 5 more days.

Brian left to go home today but his flight got cancelled so he will be returning to the RM house for the night. He will be with Jake and Chanda for treatment tomorrow.

Please pray for Jake during these painful treatments, that they will do the job they are supposed to do!

I will update as often as I can to keep you all informed.

Auntie Pat

Tuesday, July 1, 2003
Hey Y'all~

Can you believe that it's JULY 1st ALREADY? I can't. We made it back to the city this afternoon around 1PM. The SEA STREAK ferry was really nice and relaxing and the weather has been beautiful here.

Bricktown as always is awesome. The Carbone's are awesome friends and we are forever grateful for all they have done for us!!!!! I actually got to relax and worship some wonderful sunshine and Jake received much R&R and LOTSA LUVIN!!!

I had to take Jake back in for labs today. He's holding steady. The docs want another CBC on Thursday morning. So, hopefully he'll be holding okay by then and we can sail on over to Bricktown for the 4th festivities?

Doc Kushner says Jake’s tests all came back GREAT. No NB in the BM and the PET showed significant IMPROVEMENT from the April scan. So the chemo from hell apparently knocked the NB from hell back a bit. Can I get A PRAISE GOD HALLELUJAH ON THAT???????

Kushner is FREAKING beaming from ear to ear. Jake of course has been a complete whipper head to Kushner. Don’t feel bad McMahon, Kushner gets the abuse too.

Well, we miss everyone terribly and can’t wait to get this two-week round started and finished. Hopefully it will go quickly and we won’t go crazy. Uh oh…YEP definitely WAY TOO LATE on that one huh? Other than that, we want to go home. DUH. I'll update when I've got more to say.

Thanks as always for stopping by and saying prayers for the “Jakester”

Monday, June 30, 2003
Hey Jake Fans~

We are having a BLAST in Bricktown! The Carbone's are so hospitable it's incredible. You gotta love em!...WE DO!!

Jake is eating good and is in great spirits and yes, still being ornery as hell. What do you expect? Like mother like son!

We are heading back into the city Tuesday for labs and to hang out a day or so. Hopefully Jake's counts are stable and we are able to turn RIGHT back AROUND and hang out here in Bricktown again for the 4th's festivities.

Daddy is flying up on Thursday night for much needed snuggles. We can't wait to see you Daddy!!! we miss you terribly and love you very much!!

We are all enjoying the weather and company over here in NJ. I just can't explain it, we feel like we are at home. That's a big FAT plus when you are never at home right?

RIGHT!

Gotta run. Thank you all for stopping by and checking in on The Jakester and as always....SAYING THOSE PRAYERS!!
XO

Friday, June 27, 2003
Well HOWDY FROM THE BIG NYC!

The CT went fine today, Jake is a champ. He gave me the thumbs up the entire time. The SCAN Techs are all amazed with him all the time, he's a trip! He did have to have platelets today. But his counts are good and he's in great spirits. When little man is happy, we are all happy:O)

Good news, looks like Jake is starting the Beta & 3F8 trial on Monday the 7th. The protocol states he HAS to be at least 28 days out from the last day of chemo (AND HE'S 25 DAYS OUT UGHHHHHH), otherwise he'd be starting on Monday the 30th. UGH... Oh well, it's not like we are going to get borred here right? We are in NYC for goodness sake.

This trial is the higher dose trial and Jake is the last child to get in on it. Sure do HOPE & PRAY & HOPE & PRAY& HOPE & PRAY it does the trick.

We hit the ground running yesterday and visited the Natural History Museum. THAT PLACE ROCKS! Jake is a DINOMANIAC, so it worked for us! The place is like SO huge, so that's about all we saw, very COOL!

Oh and of course, he wanted to visit FAO Schwartz, and we did...That place is cool too. We all had a blast and I think Mimi is digging NYC. She just follows my lead, you know the lead.... follow.... or get lost real quick kinda lead....

HAHAHAHAHHAHAHHA

Yep....I received my insanity licesnse a long time ago. Just roll with it will ya?

Gotta go, gonna try and plan a trip to NJ for a day or so, I'll update ya all later.

Thank YOU ALL for stopping by and checking in on the JAKESTER and saying those AWESOME prayers!
XO

Wednesday, June 25, 2003
Hey Y'all !

It’s HOOOOOOOOOOOOOOOOOOOT here!!

Oh YAY, I have an ornery child giving me lots of LIP right now as I write this. Soooooooooooo, this might be short.

Yesterday went well, Jake had bi-lateral bone marrow aspirations done (all for sides) SOO he's really stiff and yes, quite PISSED.... THEN, after that he had to have blood. So, they gave him some benadryl and he ZONKED out again…UGH…makes for a long day

Just in the NICK OF TIME. …AHHHHHHHHHHHHHHHHHHHHHHHH instant relief.... MIMI has found us, and she's kidnapping the "JAKE-A-SAURUS!"

Back to the journal and my sanity.... Anyway, let's see yesterday Jake decided he wanted to take a nap after arriving back at the RMH. So, after about 2 hours, he woke up and wanted to go to TOYS-R-US. So we took him. I think Mimi's head is still spinning. I took pictures of the ferocious TREX and will post later. I'll be compiling a large gallery of NY photos I’m sure.

Today went well, no fainting despite the hypoglycemia. Jake did well and he was done with the PET scan around 1:45PM.

Tomorrow we have off, and we are doing something fun? That's really not hard to do here.

Oh yeah…. He also has to have a CT on Friday morning, so... I'll be updating again soon.

I'll have all results Friday sometime.

Thanks for stopping by and checking and SAYING THOSE PRAYERS FOR THE JAKE-A-SAURUS!!

Tuesday, June 24, 2003
Hey Y'all!

Weeeeeeeeeeeeeeeeeere heerrrrrrrrrrrrrrrrrrrre! Made it safe and sound yesterday afternoon. We are in clinic right now waiting for his bone marrow aspiration to be done. He's pissed because he has to be sedated for it, and that means no drink or food. I would be too. I don't blame him. He is being entertained right now in the playroom praise the lord! It's a good thing to be able to keep his mind off everything that makes him ornery...

Jake's also getting blood today after the procedure because it's like 7 something? Platelets are 28,000 so he'll be getting those in a day or so I'm sure.

Our friends Harrison is here today in clinic awaiting his treatment it's so good to see him looking so good.

After today's procedure, Jake says he wants to go to the toy store. UGH.. I guess if he's up for it, I'm taking him right?

I'll update later on after today's excitement. Thanks for stopping by and checking in on Jake.

Thanks for the prayers too!

Sunday, June 22, 2003
Hey Jake Fans~

Jake busted out of the hospital yesterday morning. Just in time to un-pack and re-pack for NYC. He's doing good, and very glad to be home. He's pretty pissed about being away from his Daddy again. I'm not too happy about it myself, but what choice do we have? ABSOLUTELY NONE! I got good sleep last night, and am hoping to get another straight 8 tonight YAY! Sleep deprivation is on my VERY long list of things that TRULY SUCK ! ! !

We are driving to Asheville tonight and flying out from there in the AM. I'll update once we are settled.

Thanks for stopping by saying those prayers and checking in on "The Jakester".
XO

Thursday, June 19, 2003
Hello Jake Fans~

WELL CRAP! IS WHAT I HAVE TO SAY!

Jake's STILL in-patient. His WBC dropped back down to (.2) today. I'm hoping his WBC's will get the move on here anytime now....I'm praying he at least gets to spend the weekend at home..

Other than that, he tires out very easily and is sleeping alot. His appetite is starting to pick up, but he's boney looking to me. So I'm whipping the Megase (appetite stimulant) out today. He's quite ornery and very vocal about being messed with. Can't hardly blame him. He told all the nurses yesterday he's HAD ENOUGH!

Well NYC is wrapped up, we should be getting in Monday and testing starts Tuesday, we are off Wednesday and more testing on Thursday and Friday. I'll update from there.

Thanks for stopping by and checking in. We are going to be non-stop for the next few days trying to bust out of the hospital and getting to NY so wish us some luck and keep on praying will ya?

Thanks
XO

Wednesday, June 18, 2003 8:45 AM
Jake is doing well, his white count is 300 and he will probably get platelets today. They are hoping to get released tomorrow. Chanda is still finalizing plans for New York, she will update when she gets home.

As always keep Jake in your prayers.

Thanks
Auntie Pat

Saturday, June 14, 2003
Hello Jake Fans~

Jake has hit Rock Bottom on the whites today. His platelets are hanging in there at 39,000 this morning. And his Hemoglobin is good at 10.

He's sleeping a lot, and yes of COURSE still being a complete maniac. I crack up, because he's such an "old-man". He gets SO impatient with people asking him what his dog's name is. He told the nurse this morning "UGGGGGGGGHHHHHHHHHHH IT'S NANOOK ALREADY!!!" I about fell off the bed. Geeeez I wonder where he gets that streak of meaness? Hmmmmmmmm...

He ate a little yesterday evening, and hasn't had any symptoms of diarrhea or vomiting...PRAISE THE LORD! The blood cultures are NEGATIVE, and his fevers are sporadic. Still pinging from normal to 100'ish...They come down on their own without Tylenol. This is a good thing....

Ummmmmm let's see, well Jake's whites won't probably come around until like Wednesday or Thursday. He didn't get them last month until day 18. He's day 14 today Sooo, we are camping out at CMC until then at least.

Other than that, we are hanging in there as best we can, abusing the wonderful staff at CMC like we always do. For some reason they keep coming around like they like us or something? I can't figure it out...

That’s all for now.. I hope tomorrow is the best Father's day for all you Dad's reading this. We are going to try and make it a great day for Brian.

Thanks for stopping by and checking in on Jake and saying those prayers!
XO

Please say a prayer for our little buddy Harrison

Thurs - June 12, 2003
Well his ANC is like 0 he got blood today and platelets yesterday. He's on Vanc & Ceph for whatever might be the "cause" of his being fevral. He's maintained around 99-100ish... today. Doc Golembe is on rounds this week as Doc McMahon is sinking his toes in the sand IN THE BAHAMAS. Jake keeps asking me when we can go home?????.....I keep asking Brian, (and GOD of course) when can WE GO THE THE FREAKING BAHAMAS ALREADY?

SOOOOOOOOOOOOOOO We both have crappy attitudes and feel like caged animals. He's tired of being poked and prodded and he's letting the good ole Courtney attitude rip and telling everyone to leave him (THE HELL) alone (in his way of course) when he's had ENOUGH!!!! He's my hero and I love him. Thank you GOD for every single moment....

Stop by Harrison's page and say a little prayer. He's in-patient in NY with "unknown fevral" symptoms. We are thinking of you guys..

I'll update when I've got more to share....

PS
I still WANNA BE SEDATED!

Wednesday, June 11, 2003

100.5 temp just checked, and you know it ain't gonna stop there.....SOOOOOO this is just a quick note to let you all know we are heading to CMC for at least 7 - 10 days of fun and excitement.

This package includes watching our child throw his guts up, and have diarrhea round the clock....ALL for the mere cost of about $36,000. Now that's a HELL of a trip!

And then when you get home, you get to endure the harassing phone calls and threatening letters because your insurance company can't do their job right and nobody wants to make SURE the claims are filed properly on either end.

I'll update when I have more news...

No WHITE COUNT = NO VISITORS...I'll call if we need anything.. Thanks for stopping by and checking in.

PLEASE Say a prayer for our little man....

Look out OUR FAVORITE Child Lifer's here we come!!!!!!!!!!!!!!

"TWENTY.."TWENTY.."TWENTY.."TWENTY..FOUR HOURS TO GOOOOO..I WANNA BE SEDATED ! ! !"

Monday, June 9, 2003
~ HOLA Jake FANS~

Well Jake has officially taking neutropenic DIVE... All I can say is CRAP! I can however think of a MUCH better word, but I'll spare you all the "Chanda" DRAMATICS.....

WBC = .4 (400)
HGB = 9
PLT = 31K
ANC = 228

*@%* &%$#@!* %$#* = (YOU FIGURE THAT ONE OUT.....)

Jake's appetite is SERIOUSLY SLACKING OFF, but he's still drinking and trying to eat. Mimi is taking up some serious SLACK in the kitchen and throwing down some SOUTHERN STYLE GRUB. My Mother is an AWESOME COOK! We are SO grateful for her help. I was beginning to think I was on my way to the "meltdown" stage. Mimi is definitely our saving grace. All in God's timing...I'm constantly reminding myself....

So, other than what I've blabbed about tonight, life is good right now. My little man is happy and constantly giving and receiving much LOVE. Although, he did get timeout for throwing some toys at Doc McMahon today in clinic. He shows out quite often.... Poor Doc always gets some sort of physical/verbal abuse from both of us....

We are getting Jake OUTSIDE ALOT and praying that he does NOT get any fevers, but as you all know.... we are not in control of these things.

Thanks for stopping by and FAITHFULLY saying prayers for ALL of us!! We appreciate you all and are very grateful for your support. I'll update again once I have any more news to share....

XO

Friday, June 6, 2003
Chuck E. Cheese update ** SEE PHOTOS **

We had a blast!! Thank you Julie, Olivia & Wesley. We all had a blast and these photos show it. Enjoy.........Have a blessed weekend, I'll update after Monday's clinic appointment.
XXOO

Hey Jake Fans~

We are home, and yes for now Jake is PINGING OFF THE WALLS. Good thing, cause I'm in the mood to do some PINGING myself. So on that thought, we are hitting the ground running and going to Chuck E. Cheese today for a small celebration with friends. Everyday should be a PARTY when you are feeling good!!!!!

**Stop back in later for new photos**

It a beautiful day and we are going OUT to SOAK it ALL UP!

Have a Great DAY!

Thanks for stopping by and checking in on the Jakester.
XO

Tuesday, June 3, 2003
Hey Jake Fans~

Jake is doing well, still pinging off the walls and being a complete maniac. He's turned into a little mouse and loves to eat nothing but cheese here lately. His Cytoxin finished this morning at 1AM and now we wait for the red-devil to finish up on Thursday. We were up about every 20 minutes last night with him peeing. He told me this morning that he was TIRED OF PEEING!!!!!!!!! It was brutal, so we are both cranky and sleep deprived.......ughughughughughughugh.....

Mimi is getting settled in and we are glad for the help. We are all very glad to have her here for good. We need NOTHING BUT PRAYER!! Please, I promise to call if we need anything.

The Rodeo was a success, we went on Friday night. That was pretty darn cool. Jake wasn't the least bit interested. All he wanted to do was play with our newest friend Haley (from Athens), and of course Samantha & Josh. Thanks Haley for having dinner with us and hanging out with us. It was a pleasure to meet you and we hope we see you again soon..XOO

Well the official word is Jake has a spot for the trial to begin on the 30th. IF THE SCANS AND TEST REVEAL HE IS STILL ELIGIBLE. So...Mimi, Jake and I will head up sometime the week of the 23rd for scans etc....

Doc McMahon says the nodes in the neck area are still gone. I don't think I'll ever be relieved. I think I'll always have a feeling of not wanting to breathe just waiting for the other shoe to drop. You just never know what to feel. We try to smile and say we are fine, but inside we want to crawl in a hole and die. The not knowing, the treatment-to-treatment thing is ripping us apart. There's way too much propaganda out now about these types of trials and EVERY CHILD IS DIFFERENT. I still have hope for something to WORK! Gotta have HOPE, even though I've said it is our greatest strength, it's also our greatest weakness.

That's all I've got for now. I'll update sometime this weekend if there is any news. Have a great week and thanks for stopping by and checking in on the Jakester.

XO

Thursday, May 29, 2003 5:02 PM CDT
Hey Guys~

Jake is having a FANTASTIC WEEK, feeling good and getting OUT in the FRESH air as MUCH as POSSIBLE!! I'm a firm believer that sunshine and fresh air do the body good.

Today we met up with some of our favorite friends Harrison & his Mommy Gina. Jake LOVES GINA ** SEE PHOTOS** Gina you know if I have your photo it's being published on this page.... I know...I know.... paybacks are hell right? Just kidding, it's an ADORABLE photo and Jake is quite the HAMBONE I must say...We had a blast with you guys and (Sheila & Logan...) hope that we can meet up again soon on our turf and hopefully the boys will be able to PLAY LIKE NORMAL LITTLE BOYS once again....

Other than that we are getting geared up for Mimi to move in with us this weekend and get her settled. I'm looking forward to the help and Mimi is looking forward to spending the time with us. All in God's timing, as my good friend Sheri keeps reminding me of. ~Love YOU Sheri....

We are excited about this weekend’s event in Mooresville. I'm so happy that an organization like GODSTOCK (and all you SUPPORTERS) continues to faithfully raise money to help out families with everyday living expenses that have other financial burderns or tremendous medical financial burdens.

Hope to see you all if you come to the RODEO!

Jake's due to be admitted Monday morning 6/2/2003 for chemo. He should be out of the hospital by Thursday afternoon. I'm looking forward to a few days at home, and very much expoecting to return to the hospital with a neutrapenic fever and camp out at CMC for about two weeks around day 7-10.... We should be in-patient for the better part of June.

I was thinking about asking Ms. Susan (Master Child Life Guru)if she'd coordinate a dump truck dumping a load of SAND on the CMC property somewhere and we could at least PRETEND we were at the beach????? We love you Ms. SUSAN!!!!(No....seriously think about it will ya???)

It's pathetic that I have it down to an exact science. But hey...you know your a "cancer parent" when you can calculate a netrapenic fever and schedule your life around it as well.....UGH....

Have a GREAT WEEKEND and thanks for stopping by and checking in on Jake and continuing your loving support and friendship. I'm forever grateful for your prayers for Jake's healing AND our STRENGTH and PATIENCE...

Tuesday, May 27, 2003

**NO CHEMO THIS WEEK**
Jake's ANC is too low. It = 525 to be exact. His counts are stable his platelets are 116,000 YAY! but he needs a few more days before being hammered once again. So, hey we are looking on the bright side...we get to have another great week and weekend with Jake feeling good and having fun!

Monday, May 26, 2003
Hello Jake Fans~

Before I begin today’s journal, I would like to make a few comments. The first thing I would like to point out to everyone reading this page is that I am not mentally challenged. I have a child with a HORRIFIC disease and a few times a month I have to expound (as my Mother so politely puts it) on this page. If I don’t get it out on this page… it’s MORE than likely that a public beating would take place on a poor innocent by-stander, who has absolutely NO CLUE AS TO WHAT WE ARE GOING THROUGH. (No need to be alarmed folks, that was indeed a joke)

Now, those that are near and dear to me, accept my DRAMA with grace. I just want to take a moment and thank you all for accepting me as I am. I’m past the point of change people….I figure anyone faced with any situation similar to what we go through has EVERY EXCUSE TO BE MENTAL ALL THE FREAKIN TIME!!

Now on to the most important news… WE HAD A BLAST AT THE BEACH! NO PHOTOS SO USE YOUR IMAGINATION. It was very relaxing but NOT LONG ENOUGH UGGGGGGGGGGGGGGGGGGGHHHHH! The weather was BEAUTIFUL, the hotel was FANTASTIC! And the weekend was perfect. Very relaxing and very much needed THANK YOU KIM! WE LOVE YOU!

The Nascar festivities were very cool ** see photos** Thank you VERY MUCH to Ms. Kellee Schriner of CTC, you are a doll and we very much appreciate all you did for us this past week. THANK YOU for a chance of a lifetime being infield at the speedway and getting a “ring side” seat for all the NASCAR action, it was very cool and we are forever grateful!

For everyone who saw us on the news, I just want it known that I do not have a double chin and I was horrified to watch myself on TV. AND IF I WASN"T HARD ENOUGH ON MYSELF...MY GIRLS dished it out the GRIEF by the spoonfuls…just kidding, they didn’t give me too much lip. They did however make THE POINT TO TELL ME HOW ADORABLE MY SPOUSE AND CHILD ARE!! LADIES LIKE I DIDN’T ALREADY KNOW THAT ONE DUUUUUHHH!!

I’m SO GLAD GODSTOCK GOT SOME PUBLICITY! We LOVE YOU JOHNBOUK and EVERYTHING YOU HAVE DONE FOR US AND CONTINUE TO DO FOR ALL OF US AND OTHER FAMILIES Struggling with the day-to-day life of a loved one fighting to LIVE! You and your family are part of our family for good!!

Well, let’s see… yep I'M GUESSING this will be a SUCKY week because I’m sure Jake will have to be admitted for chemo. I’m not sure, it might be Tuesday, and it might be Wednesday? I won’t know for sure until his labs are drawn tomorrow. His platelets have to be above 70K. Doc McMahon says there's no slack time, so looks like we are trying to maintain the beast. He’ll be getting the same round as last and hopefully we will be home in about three or so days. I PROMISE TO CALL IF WE NEED ANYTHING. Please stay tuned for news here.

Thank you ALL for stopping by and checking in on the Jakester and continuing to pray for his strength and our patience. It’s nice to know so many of you care so much and I know GOD hears all of our merciful prayers for Jake everyday…

XO

Wednesday, May 21, 2003
And here's what you've all been waiting for....

Jake gets to have more chemo. I fell apart today on Doc McMahon. I cannot explain what it does to us to watch Jake endure these chemo treatments. NO ONE WILL UNDERSTAND UNLESS YOU HAVE BEEN THERE YOURSELF. Our hearts are broken once again because poison is the only thing that can maintain this beast within my child.

Yes I'M VERY HOPEFUL Jake will begin receiving the (2nd dose trial) antibodies soon. When will that be exactly?? YOUR GUESS IS AS GOOD AS MINE…. Maybe Mid-July???? We are beyond frustrated and feel like we have been sucker punched.

Yes I am very grateful for MSKCC, without them Jake wouldn’t still be here. I am only HUMAN, I am a MOTHER! I HAVE FEELINGS! I have every right to BE PISSED and DO NOT NEED TO BE REMINDED to be thankful!! I am THANKFUL every time I look into Jake's eyes. I praise GOD everyday for EVERY BIT of every moment I have with him!

For the past 16 months Jake has been under the care of MSKCC, and we literally have waited month to month not knowing what the next few weeks would be like? Will Jake live another month? Can they get the tumors in time? Can we breathe?

I cannot tell you how much Brian and I think about Jake playing t-ball, being in school playing with friends his age. How much more can our hearts break? Tuesday at the YMCA the little children were in pre-school and Jake wanted to go in and play SO BAD. He couldn't because there was a child that was sick. He got SO MAD at us and wouldn't talk to Brian and I for about 20 minutes. He yelled at us and said it wasn't fair. WELL IT ISN'T FAIR DAMNIT, IT SUCKS AND HOW DO YOU EXPLAIN THAT TO YOUR 4 1/2 YEAR OLD CHILD?? !!!

Our family is very tired and frustrated and has been "in the dark about what's next" since then. We are getting through each day the best way we know how. No it's not okay and NO I'm NOT ALL RIGHT! Inside our world is the unknown. There is no crystal ball here, There is no "GAME PLAN" the docs are shooting from their hips sometimes...we HANG ON TO HOPE and that IS OUR GREATEST STRENGTH AND WEAKNESS. We smile and hide it the best way we can because we are living in hell, how do you explain that to the anyone without ripping their heart to peices?? It pains me to have to give Jake chemotherapy again. I cannot explain it. I'm just very angry about it at this moment and I’m letting it rip!

We are going ahead with our plans this week, but have added a ROAD TRIP to the beach for two days of much needed fun in the sun…rain…. who really cares as long as we are together and happy for the moment….

I’ll update when we get back with photos and any new and exciting news

Tuesday, May 20, 2003
Hello Jake Fans!

Jacob is still doing GREAT! This week has been ABSOLUTLEY crazy so far… Last weekend was great! Daddy and I went to see the Matrix “Reloaded” that was very cool. We got to have dinner together, it was very nice. We haven’t done that in a long time. Mimi was a HUGE help and kept Jacob very entertained while I ran some MUCH needed errands, fought with the insurance company on the phone etc…etc…. That was a BIG plus, because I didn’t have my 4 YEAR OLD yelling at me while I was trying to STRAIGHTEN OUT THAT MESS on the phone! It’s so nice to have HELP. I don’t know how we’ve done it this long already?

Last night we met with Kellee of CTC and JohnBouk of GODSTOCK in preparation for the Nascar Coca Cola 600 festivities this week. Jacob flirted with all the waitresses and even got me up dancing. We had a blast.

Each year CTC highlights a local charity and this year GODSTOCK was picked…. So…. Jacob has been chosen to “spot light” for the GODSTOCK child. Brian and I are so excited because GODSTOCK is going to get the publicity they deserve. A lot of people come together and support a lot of families in need when one or more parents are caring for their child while fighting a “life-threatening illness”. Everyone needs to know how much GODSTOCK means to our family. We are forever grateful.

Today was a BIG day. We are met with NBC6 this morning at the South Rowan YMCA for a special story about GODSTOCK. JohnBouk asked us to come and Chris Justice of NBC6 interviewed Brian, Jake and I about what GODSTOCK has done for our family. If you get a chance watch the report Friday @ 5PM or Sunday @ 7AM, it’s the Faith & Religion report NBC6 does every week I think. Chris Justice interviewed Jake in April with Colleen Oddegard while promoting the CMN Celebrations for Saturday May 31, 2003 from 8-9AM on NBC6. So mark your calendars Jacob Courtney is busting out on television. He’s not very shy, as most of you all know anyway, so you can imagine just what little trip he was today.

After this morning’s interview we headed down to Lowe’s Motor Speedway to promote this weeks pole night purse with last Saturday’s Winston winner Jimmie Johnson. Everyone was so nice and **SEE PHOTOS** of Jimmie and Jake at the press conference. We enjoyed meeting everyone and even got to meet Tim Hayes and his family, which was very inspirational for me, I have prayed for him and his family ever since I first heard about his tragic accident. **See Photos**

Wednesday I’m taking Jake in to clinic for labs and the usual harassment of the docs & nurses.

Thursday we are heading down for the pole night festivities at the Speedway. Apparently we get to hop in and ride around the track in a pace car. Should be fun and full of excitement. We are just glad to be together and so glad Jake's feeling good and having fun.

Let’s see Friday, I think I’m going to just FLOP ON THE COUCH and VEGETATE. We haven’t had this much action in a while. I’m already worn to a frazzle and it’s only Tuesday…

This weekend I’m looking forward to relaxing and spending time with my family.

I’ll update when we have more news, still no word on NY. Something’s got to give soon, trust me…

Thanks for stopping by and checking in and continuing to PRAY for the “JAKESTER”

Friday, May 16, 2003
Hello Jake Fans~

Jake's labs are hanging in there.
WBC = 2.1
HGB = 8.6
PLT = 53K
ANC = 1008

We have had a busy week. Today we visited Discovery Place in Charlotte, how cool is that place? Jake had a BLAST and was WALL TO WALL CRAZY ABOUT IT!! After that we visited The Brickhouse Tavern for lunch and met "JOHNBOUK" of Godstock. That place has GREAT FOOD. If you are ever in Davidson and HUNGRY, GO THERE!

Mimi is here and is moving up to Charlotte from Georgia to stay for GOOD at the end of May! This is a good thing because we need the help and JAKE LOVES HIS MIMI! YAY!!!

No NY News. STILL.... we are trying to do the best we can and get through each FRUSTRATING DAY AS WE CAN. ***We need your prayers for PATIENCE and strength***. It is VERY hard to smile through all the pain. Please understand that we don't want to talk about what we are going through ALL THE TIME. I promise if I have any news AT ALL, I will post it here. That is what this page is for.

We have a great weekend planned; I think Mommy & Daddy even have a DATE on SATURDAY! HOLY COW!!!we are beside ourselves I tell ya.

Gotta go round up the little tyrant, he's discovered that he can manipulate Mimi into doing anything and is WEARING HER SLAP OUT! Jake's eating like a maniac and is steadily gaining more and more energy. He in fact has enough energy to zip around this pad and roughhouse with his Daddy. I'm sure our downstairs neighbors think a herd of elephants live here. That's okay, we have a herd living above us, so if we have to suffer SO DO THEY. (I realize that is so wrong....)

Thanks for stopping by and saying those prayers for the “Jakester”

Monday, May 12, 2003
Hello Jake Fans!

Our weekend was great, Jake and Daddy made Mother's Day just perfect. We hung out together and had fun outside. I couldn't have asked for a better Mother's Day I got to spend time with my two favorite people in the whole world OUTSIDE OF THE HOSPITAL!

My brother came up for a visit as I'm sure everyone saw on the photos. Jake loves his Uncle Josh.

Saturday Daddy & Uncle Josh took Jake in for platelets. He was sitting at 14,000. I spent the day with Auntie Pat...blah blah blah...you know for some much needed Mommy time.

Jake was seen at clinic today. His labs results are as follows:
WBC = 5.5
HGB = 9.6
PLT = 52,000
ANC = 4400

These white's are "hulkanized" by the GCSF shots he's been getting, this count will decrease significantly within a few days and then Jake's whites will start growing on their own. But for right now HONEY ALL BETS ARE OFF! With and ANC higher than 1500 Jake got the good news "no more shots" from Michelle at clinic and he screamed out "COOL BEANS!!"

All right well here's the NY scoop. It goes like this folks, the past two chemotherapies have definitely HELPED to RETRACT the NB monster growing inside Jake. But, it is NOT A CURE by ANY MEANS. JAKE HAS GOT to get on those antibodies soon or yep; you guessed it, that nasty beast will start growing again. My fear is that Jake will have to endure more chemo treatments before there's a spot available for him. We are still waiting to hear what the “deal” is exactly. @#$%^& *&^%$%^ ^&*($@!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (Use your imagination)

THE BIG FAT Drawback:
Besides CHEMO FREAKING SUCKS (hey what do you want from me?)

Every time Jake has chemo it takes HIM LONGER TO REBOUND TO HAVE ANOTHER ROUND OF CHEMOTHERAPY just to get him well enough to PUT HIM BACK IN THE HOSPITAL FOR MORE CHEMO TO KEEP HIS DISEASE IN CHECK. The distance between the times he receives chemo are getting SHORTER and eventually it will just all catch up and NOT work AT ALL.

Brian and I are trying to keep our sanity, we are complete wrecks. How can there be a GLIMMER of hope for a cure with the all these FREAKING stipulations and the BLOODY criteria we are faced with?

YOU TELL ME HOW YOU WOULD FEEL? YEAH sometimes I feel likes it's never ending, sometimes I feel like my CHAIN is being YANKED! I’m tired of HANGING in THERE...HOLDING ON...BEING PATIENT...SUCKING IT UP...STAYING HOPEFUL...OPTIMISTIC...BITING MY TOUNGE...(for those who know me it is possible on one of my good days...)

I WANT A TREATMENT THAT WILL BE EFFECTIVE FOR MY CHILD'S CANCER I WANT A CURE I'M SICK OF WATCHING HIM SUFFER LIKE THIS. THIS IS HELL...this is our own private hell.

That's all the energy I have for ranting today. Please stay tuned for lots more fun and future expletives (@%*@#*!!)...

PS.
Thanks for stopping by and checking in on Jake and saying those prayers...

Friday, May 9, 2003

Hello Jake Fans~

Yes! Jake is home from the hospital! HOME SWEET HOME! Jake was released yesterday around noon. We are settled and trying to relax and enjoy ourselves. Jake has successfully trashed this apartment. He LOVES to DRAG his TOYS from one end to the other (WHAT LITTLE KID DOESN’T RIGHT?). If I’m not stepping on a Power Ranger, I’m stepping on THOSE DANG MINI-CONS!

Don’t even get me started on the teeny weenie LEGO PIECES EMBEDDED in the carpet UGH those REALLY hurt when you step on them! “No Jake….your toys stay in YOUR room”! “NO MOMMY I like them ALL OVER THE APARTMENT”! That’s the battle of the day…

Ahhhhhhhh…. how nice to be home……………..I think I’ll take stepping on toys ANYDAY at home versus being in the hospital. Thank you Child Life for always being so kind and loving to Jake, we love you guys!!!

Jake is doing ok this morning.... His usual rottenness is coming through. I can’t tell you how happy it makes me when he gives me SO MUCH GRIEF!!!!!!!!!

Home Health came by this morning to draw a CBC, I’m sure Jake will need platelets and possibly blood, either today or tomorrow? His hemoglobin was around 8.6 and his platelets were like 30,000 yesterday. His appetite is crappy and his fluid intake is lacking, I’m hoping it will pick up or else TPN will be on the horizon….

Well, we are all set for a relaxing fun filled weekend. We are going to the South Rowan YMCA on Saturday to hear the band "Disciple". They will be playing there from 3-7PM. For more details check out ~GODSTOCK~ it should be a lot of fun. Jake LOVES to be outside and run around like a little maniac.

NEW YORK NEWS:
Quote: "It is unlikely that Jake will have a spot on the 19th of May to begin the beta trial".

My opinion:
THAT FREAKING SUCKS BEYOND WORDS!
THROW ME A BONE WOULD YOU!

Brian’s opinion:
Yep well….This is a “G” rated page…I won’t even go there…

Explanation:
We are waiting to find out when we are due back in NY. I’ll update you all and advise when I know any new details…That's about all the energy I have for this right now.

Thanks for stopping by and checking in on Jake and saying those prayers. You all mean the world to us!

Happy Mother’s Day...

Tuesday, May 6, 2003 7:40 AM CDT
Jake is doing well, his white count is rebounding and the diarrhea is gone. Right now he is on 24 hour TPN so he is not eating. Chanda is going to request they drop it to 12 hour TPN so maybe he will start eating. Jake is still stubborn and giving Chanda grief when he can, typical for a little boy.

Chanda is hoping to break out of the hospital on Thursday and enjoy a relaxing weekend at home. Time will tell. She will update when she get home and tell everyone about her adventures at CMC.

Please pray for Jake’s white count to increase and for starting the antibody treatment soon.

Auntie Pat

Friday, May 2, 2003
All right so the whole 50% thing SUCKS TOO!

I think my favorite part was when the %#$@*&% resident doctors came in Jake's room at 1:00AM this morning. Since Jake was admitted around 9PM..They took their time getting to Jake. Apparently they had no clue what they were in for.

Yep, I threatened they'd lose a limb if they turned on the lights. They wanted a history of Jake's illness. What the hell? You want what? Have you lost your mind? I HAVE BECAUSE IT'S 1AM LADY! They politely left after they successfully PISSED me off. It took me over an hour to go back to sleep! GOOD GRIEF!

Jake's WBC was at .4 (400) this morning. He has tested POSITIVE for a line infection. NOT GOOD (DUH). But, his fever broke today and he was at 99.4 when I left tonight. He even was eating chips. YAY! He's on 24hr TPN (DRAG) and the diarrhea has calmed down a bit. So, we will see? I'm hopeful he won't have to be in-patient too long. Doc McMahon says he will be in-patient probably till Tuesday?

Daddy's camping out tonight with Jake. I'll update more when I get a chance...

Thanks for stopping by and checking in and saying those prayers for Jake.

Friday, May 2, 2003 11:50 AM CDT
Hey everyone!

Well, the dreaded fever has arrived. Jake started having diarrhea yesterday and a low grade fever. By 9:00 last night he had a full blown fever and it was back to the hospital for Chanda and Jake. They checked into CMC last night for who knows how long.

Please pray for Jake and Chanda will yell if she needs anything.

Auntie Pat

Wednesday, April 30, 2003 **NEW PHOTOS**

Hello Jake Fans~

Well Jake’s labs today reared some MOST heinous results....

WBC = .1 (that’s 100)
HGB = 6.7
PLT = 9,000

OUCH!

YEP YOU GUESSED IT, We camped out at CMC today. Surprisingly enough we were in and out of there in only 9 hours. Not too shabby for receiving both Blood and platelets. Once Jake’s blood was finished we hit the ground running. Daddy brought dinner so Jake decided to ride home with him. That was most appreciated because Mommy got to roll the windows down in the car and BLAST the music! FORGET THE MILK FOLKS a little Van Morrison and beautiful weather does the body AND MIND good!

Well, Jake’s appetite is on the slide DOWN. I think he wound up eating ONE chicken nugget today. He’s losing to neutropenia, UGH I HATE THE WAY THESE DRUGS MAKE HIM SUFFER. I HATE CHEMO! I HATE CANCER

CANCER FREAKING

SUUUUUUUUCCCCCCCCCCCCCCCCCCKKKKKKKSSSSSSSSSSSS!!!!!!!!!!!!!

Jake’s due for labs on Friday, I’m hoping what he received to day will get him through for the next few days. Based on our experience it won’t, so I’ll just go ahead and tell you that Doc says Jake has a 50hance of being admitted for fever between now and clinic appointment. Don’t you all worry…I politely told him where he could stick that 50hance!

CAN MY KID CATCH A BREAK, FOR PETE’S SAKE!!!!!!!!!!!!!!!!!!??????????????????????????????

UUUUUUUUUUUUUUUUUGGGGGGGGGGGGGGGHHHHHHHHHHHHH!!!!!!!

Jake had a good day at the hospital despite his stubborn antics. You know the usual not wanting to do ANYTHING anyone wanted him to do…DOC made his assistant examine Jake and stood back and laughed the whole time. I felt sorry for her; Jake’s really becoming more and more difficult. I don’t blame him…my heart tells me ONE thing and my MIND tells me to not put up with it!

That’s all the ranting I have for now, please come back for more anytime.

Monday, April 28, 2003
Hello Jake Fans~

Well CRUD....Jake's counts are BOTTOMED OUT!
WBC = .3 (300)
HGB = 8
PLT = 37,000

YIKES!

NO WHITE COUNT = YOU guessed it...NO visitors...AND NO going anywhere.. for the Jakester. THE GERMINATOR HAS BEEN RELEASED AND IS RAMPANT AT THE COURTNEY HOUSE!

I'm hoping and PRAYING Jake DOES NOT get any fever because that means he has to be admitted to the hospital for antibiotics until his whites start rebounding again. Thus would delay him from getting back up to NY for the antibody treatments.

Prayer requests:
FOR NO FEVER
FOR CONTINUED APPETITE & ENERGY
FOR WHITE CELLS TO REBOUND QUICKLY

Jake's still eating and still has energy today, so that's good. He's PISSED OFF that he cannot get out and play and have fun. I do allow him outside when no other children are around, which really SUCKS because he does NOT understand and thinks I'm being MEAN. Soooo, I'm trying my best to keep him occupied on the computer and with movies etc...I may even resort to coloring eggs again! Whatever it takes to make him smile and stay happy right?

On a brighter note:
Daddy had a GREAT 34th Birthday, and we all got alot of OUTSIDE time. We had a WONDERFUL weekend together. Thank you for stopping by and checking in on Jake and saying those prayers.

XO

Saturday update **new pictures!**
Enjoy!
update ya later gaters!

Thursday, April 24, 2003
Hello "Jakester" Fans!

WE ARE HOME!! YAY!!
THERE’S NO PLACE LIKE HOME THERE’S NO PLACE LIKE HOME………………….

LORD HAVE MERCY MY CHILD WAS A MANIAC THIS WEEK, AND TO MY AMAZEMENT, HE CONTINUED TO BE INCREDIBLY ADORABLE THE ENTIRE TIME! NBC6 and The Children’s’ Miracle Network is airing a celebration on Saturday May 31, 2003 from 8AM-9AM with Jacob. Ms Susan the Child Life C.E.O. does an interview with Jake and then Jake should be in the commercials promoting this event. So keep an EYEBALL out for a cute little kid sitting on (NBC6’s) Colleen Odegard’s lap! Don’t worry all the Power Ranger training was preformed prior to any footage being shot. Jake has to TEST his victim’s first you see………..That’s right, Colleen, John and Chris Justice all were formally training in the Power Ranger ARTS!

Decadron is another steroid that makes Jake PING from wall to wall. He was completely beside himself everyday, even the day he socked the Doc in the schnoz. To know Jake is to love him, that's all I have to say. My words that tell our adventures are I'm sure very picturesque...I hope you enjoy these antics of our life and I HOPE that each and everyone reading this page has AT LEAST ONE chance to meet our son in person.

Alrighty then.... well, we are home, the hospital stay chemo etc... Went off without a hitch. Jake's still eating, don't know how long that will last.... but I'm just happy he's happy and feeling GOOD AT THIS MOMENT. ***Special Thanks to Child Life, MS. SUSAN!! As Jake screams every time he sees her. Jake loves you and if anybody can make him happy, you do! We love you all! ***

FRIDAY is DADDY'S BIRTHDAY! THE BIG 34!! What a man, what a man, what a man...WHAT A MIGHTY GOOD MAN I HAVE!!! HAPPY BIRTHDAY BRIAN!! WE LOVE YOU VERY MUCH!!!!!!!!!!!!!!!!!!!!

The Courtney's are gonna try and relax this weekend and get in some DELICIOUS family time and I’M PRAYING FOR GOOD WEATHER before Jake's counts TAKE A DIVE. As long as he's feeling good enough to enjoy it all that is...

I hope you all have a good weekend and thanks for stopping by and checking in on Jake and saying those prayers.

XO

Tuesday, April 22, 2003 6:52 PM EDT
Hello Everyone,

Jake is doing well, he is receiving his chemo and those dreaded STEROIDS. He had a little run in today with Doctor McMahon. He punched him right in the nose. Needless to say Jake spent some time in “Time Out” for what he did. Chanda would not let him have any visitors until he apologized to Doc. He finally did!

He also had a visit from the Channel 6 Action News Team today. They were filming a special for the miracle network and stopped in to see Jake. He spent about 2 hours with them just hamming it up in front of the camera. They were very impressed with him, anything they wanted him to say or do, he did. Chanda will post the pictures when she gets them. The show will air in May, she’ll let you know when.

That’s all for now.

Keep praying that Jake does not get as sick as he did last time.

Auntie Pat

Monday, April 21, 2003
Hello Jake Fans!

We had a wonderful Easter and weekend **See Photos**.

We hung out with Mimi and had a blast, THANKS MIMI for all the good cooking we love you.

We took Jake to the YMCA Saturday to visit our special friends. Jake had a blast as you will be able to see. Thanks John for the silly string bombardment. You are the best and we love you!

As far as I know, Jake will be starting chemo today. I'm hoping he will be able to come home by Thursday.... I'll update with more news when I have it.

I'll call if we need anything, please KEEP JAKE IN YOUR THOUGHTS AND PRAYERS, that's ALL WE NEED RIGHT NOW.

Thanks for stopping by and checking in on The Jakester.

Thursday, April 17, 2003

Hello Jake Fans!

The Beach was VERY much needed but WAY TOO SHORT! We need at least a full week, just to relax from entertaining JAKE! Brian and I just melted in the sun and sand on Wednesday, and Jake enjoyed the sun and sand **see photos**. Our very favorite thing to do is vegetate on the beach and watch Jake have fun and to relax of course.

So much for the good news, Jake has to start chemo on Monday. I’m feeling quite bitter at this point. Jake’s disease is progressing, and he either needs chemo or antibodies to control this wretched beast. I’m blaming the FDA because they didn’t move fast enough to approve it so he could get started. YES I’m PISSED at the FDA!!! YES, I’m pointing my finger at the FDA!!!! YES I REALIZE they have a job to do, but MY CHILD IS DYING OF CANCER! AND WE NEED THOSE ANTIBODIES and I’m SO SICK OF HUGGING THE TOILET WITH HIM AND WATCHING HIM SUFFER THROUGH THE HORRIBLE SIDE EFFECTS OF CHEMOTHERAPY!! LIFE IS SO DAMN CRUEL. The end result is that Jacob is “in line” for this treatment, and Doc Kushner wants him up there again mid-May timeframe.

Jake is in good spirits and high energy, he knows that Mommy and Daddy are really sad a lot lately. We can now see “the knot” appearing in his chest again. He does not complain about being in pain, but is a little uncomfortable at times. I’m just nauseas from head to toe and I cannot believe that after all Jake has been through, he has to endure ANOTHER round of chemo. WHY WON’T THIS CANCER GO THE HELL AWAY?

That’s about all I have energy for right now. Mimi is coming for the weekend to spend Easter and hopefully Jake will get some more outside time, maybe even sneak in an egg hunt or two. I’ll update again with photos when I get the chance. We have a very limited amount of time together as a family. PLEASE understand that IF WE NEED YOU, WE WILL CALL. I really appreciate all of you stopping by and checking in on Jake and saying prayers for him.

XO

Tuesday, April 15, 2003
Hey Jake Fans!

We made it home safe and sound yesdterday afternoon. We had a really nice flight, thanks to Corporate Angel!

We are headed to the beach in a little bit, we will be back in a few days. We are ALL anxious to have some fun in the sand and sun.

I'll update when we get back, hopefully with some good pictures too.

No word yet from NY on if Jake will start the antibodies on the 28th or not. I'll let you know when we know.

Thanks for stopping by and checking in on Jake.
XO

Sunday, April 13, 2003

Hey Y'all!

Well we got lots of NJ Love, BIG Thanks to the Carbone Family Jake and I relaxed and UNWOUND. NY kind of spins me up a bit...I guess you all can imagine. Jake and I got back into the city today about noon and hit the ground running for much needed torture.

Yep, we headed out to the Pokemon Center Downtown and had a BLAST! That place is cool!! Also' Jake wanted to go to the FAO Swartz toy store. I couldn't find it on the map or in the darn City guide thingy, so I decided (being friendly like I am) to ask the lady sitting next to us at the Rockefeller Center Ice Skating rink if she new the coordinates for FAO Swartz. I swear she looked at me and said, "Do you mean, you need to know where it is"? (I'm THINKING)WELL DUH LADY WHAT DO YOU THINK I MEANT. NO I JUST WANT THE COORDINATES FOR MY MAP MAKING BUSINESS!! GOOD LORD!! WHAT ARE YOU KIDDING ME? GEEEEEEZZZZZZZZZ...................

Anyway, the end result of that was she didn't know and handed me a map THAT I ALREADY WAS LOOKING AT. Welp, I had to call in the troops. Yep, My girl Gina came to our RESCUE!! Thanks Gina you are my NJ & NYC city guide HERO!!!!!! We made it there and I think most of NYC was there, but had fun anyway. Jake is still REEELING from the experience. I guess I am too if you really wanted to know. Jake has this thing where he likes to just leave me in the DUST any chance he gets....hmmmmmmm..... do ya think he's tired of me yet? I did want to mention here that we hired the CLEANEST NYC TAXI I'VE EVER STEPPED INTO IN MY LIFE TIME HERE. I WAS REALLY IMPRESSED!!!! Nice ride back to the RMH!

Well, I've signed up for the day of beauty hair cut tomorrow, I'm thinking anything is better than what's happening on top of my noggin right now. Should be yet another unique NYC experience...

After that we are headed home, YAY WE MISS DADDY!!!! SNUGGLE SANDWICH TIME! I think our flight is leaving around 4PM. I will update once we are home and settled.

Thanks for stopping by and checking in on "THE JAKESTER" and
THANKS FOR PRAYING!

GOD BLESS AND PROTECT ANYONE FIGHTING TO LIVE !

Thursday, April 10, 2003

Hello Jake Fans!

Well here's the DEAL…HOLD ON TO YOUR SEATS PLEASE!

Some of Jake's disease is better…some is worse. What does that mean? Beats the hell outta me. Just kidding, it means that he's eligible for the Beta-Glucan 3F8 Antibody treatments. This treatment is on Sloan's clinical trial listing if you want more information about it. Basically it's the new clinical trial developed for resistant "bulky" tumor disease. Where Jake's disease was smaller before it's a little bigger and where it was bigger before it's SMALLER! UGH!!!!!!!!!!!!!!! This is ONE HELL OF A ROUGH RIDE!!! Does it mean things are worse for Jake? NOPE, because Doc Kushner thinks that some areas COULD be that STUPID RSV he's been fighting. They'll just RE-test (PET & CT)him again in a few weeks and we will go from there....

We were hopeful that Jake would have almost no disease. But, I think that BECAUSE of that last round of chemo, he's in ALOT BETTER SHAPE right now. I watched those nodes disappear and that KNOT go away, I know it worked. NOW HOW DO WE KEEP IT UNDER FREAKING CONTROL IS THE 10 MILLION DOLLAR QUESTION???

Here are the circumstances:
#1). Jake is not able to START Phase 1 until APRIL 28th (POSSIBLY) I have to wait an get confirmation from Doc Kushner Monday or Tuesday of NEXT week on that FOR SURE beacause the FDA only approves a CERTAIN amount of children at a time to enter PHASE 1/round 1 and ALL THE SLOTS ARE TAKEN.

#2). IF JAKE CANNOT START THESE ANTIBODIES ON THE 28TH, then he will HAVE to begin another heinous round of Adriamycin/Vincrystine & my personal favorite "The Bone Marrow Blaster" (Cyclophosphamide or CYTOXIN whatever the hell you call it) It's all poison, and IT ALL FREAKING SUCKS BEYOND ANYTHING I CARE TO ELABERATE ON!

#3). AFTER he's able to stand up from being KNOCKED OUT from that round, he will be eligible for the 2nd more potent dose (Phase 1 ROUND 2)of Beta-Glucan with the 3F8's. The way I understand it is, that the more neutropenic you are when you receive it… the better. YAY that should be FREAKING PLEASANT!

#4). DO BRIAN AND I HAVE A CHOICE FOR PUTTING OUR CHILD THROUGH HELL? NOPE? WE WANT HIM TO LIVE!!!!

This is the best offer for his LIFE we've had in a while. We haven't been given the best news in the last few months, but MSKCC has BEEN OUR ONLY HOPE! I'm convinced of that! I want everyone reading this to know that if you have any doubt in your child's cancer treatment, get your baby up here and get a consultation with these doctors!

#5). There is no optimism, or pessimism, there's only REALISM for the Courtney's. We believe everything happens for a reason and that's THAT. We ARE LEANING HEAVILY on THE LORD, and we are very VERY thankful for all the love and support FROM YOU ALL and MOST OF ALL THE PRAYERS FOR JAKE!

Well Jake has showed out more times than I care to say on this journal entry. We all know and love him, but I still want to shake all that MEANESS out of him. Lord I had to put him in TIME-OUT today in clinic! What a little SKUNK and a STUBBORN SKUNK AT THAT! Awww he's just testing the limits, seeing how far he can push me right? YEAH RIIIIIIIIIGGGGGGGGHHHHHHHHHHHHHTTTTTT....WHATEVER! He "POKED THE FREAKING GRZZLY BEAR TODAY" BUDDY!!!!!!!!!!!!!!!!!!!!!!!!!!(Daddy taught him that line…)

Jake and I are heading back to NC on Monday afternoon, just in time I HOPE FOR SOME MUCH NEEDED SNUGGLE SANDWICHES WITH DADDY, NICE WEATHER AND DARE I SAY A BEACH TRIP?? GOOD GOLLY MISS MOLLY WE NEED THE BEACH IT'S CALLING OUR NAMES!!!!!!!!!!!

Jake of course is ready to go home, but I think this weekend we are headed to the Carbone's House for a lotta NJ love. Jake is beside himself to get to that family!! I'll update when we I get the chance. Thank you for stopping by and checking in on The Jakester

GOD BLESS AND PROTECT ALL PEOPLE TRYING TO FIGHT TO LIVE...

XO

...Just a reminder, MOTHER NATURE IS THE ONE THAT CONTROLS THE WEATHER FOLKS, NOT JAKE'S MOMMY! SO BLAH BLAH BLAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You guys just keep on picking on me and I'll have a chat with her, we are close buds....

Wednesday, April 9, 2003

Hello Jake Fans!

Jake did GREAT yesterday with the PET scan and like a champ without anesthesia!

Last night we played BLACK JACK in the commom area and he won like $72,000 in chips. He hit Black Jack TWICE! He kept saying "HIT ME BABY" he CRACKS ME UP! Well, he cracked everybody up last night. I think he came in at like # 7 and got a really cool toy he wanted...

Today he did just as great doing his CT scan, he is getting really good at lying SO still and being such a good boy. I am amazed at him and how much older he acts for his age.

Today our friends Gina & Harrison were in clinic YAY!! and Jake got to play with "his best-friend". They are too cute together. Well Doc Kushner says we will have "AN ANSWER" tomorrow Thursday as to what direction he's gonna take next. It will either be surgery or anti-bodies! UGGGHH The anxiety is KILLING US!

I'll let you all know when I know, TRUST ME I'M ON MY KNEES PRAYING TO THE LORD ABOVE PLEASE GIVE US GOOD NEWS TOMORROW!!

Well this is being cut SHORT because Jake is being UNRULY ONCE AGAIN Gotta run!

I appreciate everyone stopping by and saying a prayer for Jake.
XO

GOD BLESS AND PROTECT ALL OF THE TROOPS FIGHTING TO LIBERATE IRAQ!!

Monday, April 7, 2003

Hola Jake Fans!

Alright what is this SNOW CRAP?

Thanks to the wonderful hospitality if Mrs. Donna Bridges we were able to stay about 30 minutes away from the Greensboro airport. Allowing us to awake around 4AM, have MUCH needed COFFEE and get ready, pack up and arrive on time and get on the flight by 6AM. UGH! Jake and I crashed and didn't wake up until we hit the ground!

OF COURSE THERE WAS NO SNOW WHEN WE GOT UP HERE, but now I'm being blamed for bringing it. Hmmmmmmmm.....Just kidding these folks at the RMH house are great. Anita, Juan, & Mikie are the best. They always take care of us when we get here.

Alrighty then, well I have successfully cleaned the room from TOP to BOTTOM and have settled in just fine. Jake is doing fine and for some reason is in a REALLY good mood. Maybe it's the weaning of the prednisone? Who knows, I'm just glad I'm catching an attitude/drama break for once. I'm SURE he'll show out for me and everyone else tomorrow in clinic......he always does.

Welp, here's the deal...Bright and EARLY tomorrow mornin we are headed to MSKCC for Jake's PET Scan. He has to be there for the injection by like 7AM. SO, his PET should be over by like 9AM. We will be done for the day unless we hve to pull clinic duty. I won't know until tomorrow. And THEN on Wednesday, another bright and early start Jke has a CT scan at like 8AM. So, please help our family by PRAYING for no new disease, or PROGRESSED disease.

Here's hoping we have some good news and can proceed forward in this hellacious battle.

We love you all and thank you for stopping by and checking in on Jake and SAYING THOSE PRAYERS!!!!!!!!!!!!!!!!!!!!!!!

XXOO
GOD BLESS AND PROTECT ALL THE TROOPS FIGHTING TO LIBERATE IRAQ!

Monday, April 7, 2003 9:06 AM EDT
Update:

I heard from Chanda this morning around 8:15 and she was already in New York. The weather is cold and it is supposed to snow about 6 inches. She's going to Love that. I will update as I hear from Chanda or she will when she can.

Keep Jake in your prayers and hope that his scans are all 'CLEAN".

Auntie Pat

Saturday, April 5, 2003 ***New Photos***

OOHHHHHHHHHHHH Who lives in a pineapple under the sea?
Who’s yellow and spongy and porous is he?
If nautical nonsense is something you wish…
The DROP on the deck and FLOP like a fish!
SpongeBob square pants !!
SpongeBob square pants !!
SpongeBob square pants !!
SPONGEBOBBBB SQQUARREPANTS!!!!!

Thank you to our Godstock family (especially JohnBouk) for allowing the unruly Courtney Crew to hang out with you guys last night. It was exceptionally fun! We love you all and appreciate you all for loving us back!

Jake was very excited to see SpongeBob “in the foam”. He even PUNCHED him right in the nose when it was our turn to get our photo made with him. GO JAKE! GO JAKE!! I'm sorry but the polaroid does not scan well for some reason ....and I forgot my digital. UGH! But Jake's disposition changed a bit by the time it was our turn for photo time. It seems SpongeBob had to make a potty break while we were in line the first time and he left a HUGE line of kids standing there and said he’d be RIGHT BACK” I should have known better. After about an hour, he returned and we got our photo, but by then Jake wasn’t too happy about having to wait. He’s A LOT like me when it comes to his patience level. John had a frien take some real photos and I'll get them scanned when I get a chance and share the moment.....

Anyway in the meantime he got to throw some baseballs and do this spin a wheel thingy that had prizes on it…. AND he won a camera (pretty cool GO JAKE) and he got to eat Cotton Candy for the first time, which was evencooler than anything. He’s 4 and has never eaten cotton candy how cool it was to watch. Well, to say the least we still have the WHOLE bag and I think it could last the rest of the year….

We closed on the house and all of our NAVY buddies will get a kick outta this. The guy that bought our house was on the USS AMERICA the same time BRIAN was. HOLY COW it’s a small world after all…. We couldn’t believe it, of course he didn’t know him… there was only like 5,000 men on that ship when Brian was on it, but they were both on it at the same time through it’s decommission. WEIRD HUH? What’s even more weird, is that the guys Dad was on the America too and he was there too…..

Well, we are sitting around doing the laundry, getting ready to pack for NY. Which I dread!. I just got off the phone with Gina (Harrison’s Mom) and she says it’s pretty cold up there. RATS! I was hoping I could drag some of this beautiful weather up with us! I don’t think that’s gonna happen! Jake’s excited about going to NY this time? WHY…I couldn’t tell ya. I think it has a lot to do with the Nichols family & Carbone Family. Jake ADORES GINA, Grama Rose, Grampa John and Mike, (and don’t let me forget Auntie Erin)…He cracks me up because he always wants to call Mrs. Gina. He LOVES to talk to her. “Mommy can you call Mrs. Gina? I think I REALLY NEED to talk to her”. He always manages to con his way into a TRANSFORMER discussion. The “MASTA Manipulator” at his best I tell ya. Anyway, we can’t wait to see y’all real soon and get some hopefully the boys can get some really good playtime in together. Oh lordy don't even let me mention The Carbone's to Jake, because if they are HIGHLY SOUGHT AFTER DOWN IN NC! We have to be really close before I mention them because Jake wants to go over and play at their house! We can't wait to see Mrs. Susan or "BigJohn", Little John or Christopher. Love y'all!!

Well that’s about it right now. The heavens just opened up and I believe ruined our plans for some outside time today RATS! Sooooooo, we will have to re-group and re-configure our plans..

Hope you all have a blessed day and I’ll upadte you all from the WILD WILD NORTH!

Have a blessed weekend and thank you for stopping by and checking in on this crazy family, oh and thank you for the prayers for "The Jakester".
XO

God Bless and protect all fighting to liberate Iraq....

Thursday, April 3, 2003 12:50 AM CST

Hello Jake Fans!

Yes it’s Thursday and YEP you all get another update this week. I can hardly contain myself, so I had to type this out and share with you all. Jake had clinic on Wednesday, and oh what a joy that was. Prednisone boy decided to show his butt in more ways than one. I think I showed mine too IMAGINE THAT!

First I need to explain why Jake is still on Prednisone. Apparently while in the hospital in March Jake started retaining fluid we ALL know, but what I failed to mention was that he developed fluid around his heart. Now I KNOW I SHOULD HAVE TOLD EVERYONE. But here’s the deal, I DID NOT WANT TO FREAK EVERYONE OUT. That’s the way I am, and nothing will change me, sorry. I get stressed out when other people are stressed out and I cannot take the anxiety. Yes, I do things the way I HAVE TO GET THROUGH EACH DAY with MY CHILD AND HIS BATTLE. You either love me or you don’t there is no in between…I WILL let people know when there is need for real worry. Brian and I knew that the docs had all under control, but the minute anyone hears fluid around the HEART of all things people can start to panic.

Anyway that’s WHY he’s still on the prednisone and yes the fluid around his heart is now officially gone, and yes HE IS STILL TAKING THE DREADED PREDNISONE, but is being tapered off of it slowly. Today he only gets 10mg and tomorrow and Sat. Then he starts taking 5mg…then 2.5 until he is allowed to stop.

Now on to yet SOME MORE Dreaded Prednisone drama…
Well it seems Jake told his Home Health Nurse he wanted a specific Transformer well…. he actually told me and I told her THE WRONG ONE TO GET . It turned out he already had the one she searched ALL OVER God’s green earth for and found it, and drove all the way into the clinic just to give him and hear him say “But I already have that one”. THEN we had an argument, because I swore he didn’t already have it AND he swore he did and ended up throwing an object across the clinic and by this time my friend Gina Harrison’s Mommy called me on my cell phone to yes locate more transformers for the little steroid monster that was throwing the biggest Courtney fit I’d ever seen. And yep, you guessed it I just Snapped right there in the middle of clinic. I swear I think you could hear a pin drop. But I definitely got my point across to Jake and he quickly apologized. I believe I might have even got some applause for my superb performance…So I guess my point here is that it’s yes ALL MY FAULT!

All I can say is ya gotta do, whatcha gotta do…. And by the way AMY WARREN Thank you for playing with Jake, he talks about you constantly!! And thank you for the replacement STEGASAURUS, Jake pulled the eyeballs off the other one….

And the counts go a little something like this:
WBC = 4.8 (Hip)
HGB = 10.4 (Hip)
PLT = 78,000 (Hooray)
ANC = 3360 (And another Hooray)

Well…let’s see any more news? Yep…Today I decided to take Jake to the local Nature Reserve here called The Latta Plantation Nature Reserve. It’s really nice and peaceful; Jake was a lot freaked out by all the bugs, butterflies in particular. I spoke with Brian about it and he seemed to think that was attributed to a SpongeBob Square Pants episode where a butterfly terrorizes Bikini Bottom. Well isn’t that just GGGGGGGGRRRRRRRRREEEEEEEEEEEEEEAAAAAAAAAAAAATTT? Now my kid is afraid of BUTTERFLIES! UGH!! We did get to meet their horses and they are all really pretty. Jake wouldn’t touch any of them, but he spoke to each one of them. After that he was tired, and ready for a NAP. I did however manage to snap a photo of him with a stuffed squirrel in the Nature Preserve. But that’s all for the photo op today folks, the whole butterfly thing ruined it for EVERYBODY!

Speaking of SpongeBob, we are heading up to The Kannapolis Intimidator Stadium tomorrow to meet Mr. Square Pants in the flesh…or foam, whatever you want to call it…. should be fun. We are closing on our “old house” tomorrow morning and visiting with friends Saturday afternoon for some much needed OUTDOOR TIME. Hopefully Jake will be able to conquer the whole BUG issue soon.

Remember the WWF Smack down photos from the other week? Well you might get to see some of me putting a ½ Nelson on SQUARETY PANTS, just kidding kids Jake’s Mommy promises not to hurt SpongeBob.

Other than that we will be enjoying each other as much as possible and packing for our trip up north. Fun Fun Fun…

Let me stop before I get myself into more trouble……

Thank you ALL for reading my ramblings and most importantly praying for The Jakester...We really are grateful for your love and support!
XO

Later Gators....

Sorry I've just come to the realization that God needs to NOT only Bless and protect ALL ARMED forces fighting to liberate Iraq, but also bless and protect anyone fighting any battle...DUH....including cancer etc...

Thursday, April 3, 2003 12:50 AM CST

Hello Jake Fans!

Yes it’s Thursday and ye you all get another update this week. I can hardly contain myself, so I had to type this out and share with you all. Jake had clinic on Wednesday, and oh what a joy that was. Prednisone boy decided to show his butt in more ways than one. I think I showed mine too IMAGINE THAT!

First I need to explain why Jake is still on Prednisone. Apparently while in the hospital in March Jake started retaining fluid we ALL know, but what I failed to mention was that he developed fluid around his heart. Now I KNOW I SHOULD HAVE TOLD EVERYONE. But here’s the deal, I DID NOT WANT TO FREAK EVERYONE OUT. That’s the way I am, and nothing will change me, sorry. I get stressed out when other people are stressed out and I cannot take the anxiety. Yes, I do things the way I HAVE TO GET THROUGH EACH DAY with MY CHILD AND HIS BATTLE. You either love me or you don’t there is no in between…I WILL let people know when there is need for real worry. Brian and I knew that the docs had all under control, but the minute anyone hears fluid around the HEART of all things people can start to panic.

Anyway that’s WHY he’s still on the prednisone and yes the fluid around his heart is now officially gone, and yes HE IS STILL TAKING THE DREADED PREDNISONE, but is being tapered off of it slowly. Today he only gets 10mg and tomorrow and Sat. Then he starts taking 5mg…then 2.5 until he is allowed to stop.

Now on to yet SOME MORE Dreaded Prednisone drama…
Well it seems Jake told his Home Health Nurse he wanted a specific Transformer well…. he actually told me and I told her THE WRONG ONE TO GET . It turned out he already had the one she searched ALL OVER God’s green earth for and found it, and drove all the way into the clinic just to give him and hear him say “But I already have that one”. THEN we had an argument, because I swore he didn’t already have it AND he swore he did and ended up throwing an object across the clinic and by this time my friend Gina Harrison’s Mommy called me on my cell phone to yes locate more transformers for the little steroid monster that was throwing the biggest Courtney fit I’d ever seen. And yep, you guessed it I just Snapped right there in the middle of clinic. I swear I think you could hear a pin drop. But I definitely got my point across to Jake and he quickly apologized. I believe I might have even got some applause for my superb performance…So I guess my point here is that it’s yes ALL MY FAULT!

All I can say is ya gotta do, whatcha gotta do…. And by the way AMY WARREN Thank you for playing with Jake, he talks about you constantly!! And thank you for the replacement STEGASAURUS, Jake pulled the eyeballs off the other one….

And the counts go a little something like this:
WBC = 4.8 (Hip)
HGB = 10.4 (Hip)
PLT = 78,000 (Hooray)
ANC = 3360 (And another Hooray)

Well…let’s see any more news? Yep…Today I decided to take Jake to the local Nature Reserve here in Charlotte CALLED The Latta Plantation. It’s really nice and peaceful; Jake was a lot freaked out by all the bugs, butterflies in particular. I spoke with Brian about it and he seemed to think that was attributed to a Sponge Bob Square Pants episode where a butterfly terrorizes Bikini Bottom. Well isn’t that just GGGGGGGGRRRRRRRRREEEEEEEEEEEEEEAAAAAAAAAAAAATTT? Now my kid is afraid of BUTTERFLIES! UGH!! We got to meet their horses and they are all really pretty. Jake wouldn’t touch any of them, but he spoke to each one of them. After that he was tired, and ready for a NAP. I did however manage to snap a photo of him with a stuffed squirrel in the Nature Preserve. But that’s all for the photo op today folks, the whole butterfly thing ruined it for EVERYBODY!

Speaking of SpongeBob, we are heading up to The Kannapolis Intimidator Stadium tomorrow to meet Mr. Square Pants in the flesh…or foam, whatever you want to call it…. should be fun. We are closing on our “old house” tomorrow morning and visiting with friends Saturday afternoon for some much needed OUTDOOR TIME. Hopefully Jake will be able to conquer the whole BUG issue soon.

Remember the WWF Smack down photos from the other week? Well you might get to see some of me putting a ½ Nelson on SQUARETY PANTS, just kidding kids Jake’s Mommy promises not to hurt SpongeBob.

Other than that we will be enjoying each other as much as possible and packing for our trip up north. Fun Fun Fun…

Let me stop before I get myself into more trouble……

Thank you ALL for reading my ramblings and most importantly praying for The Jakester...We really are grateful for your love and support!
XO

Later Gators....

**Tuesday April 1st, 2003 UPDATE**NEW PHOTOS**
**NY News**
Looks like Jake and I will be flying out Monday morning. Jake is scheduled for scans on Tuesday 4/8 for a PET and Wednesday 4/9 for a CT.. From there, we wait and NY decides what's next. I'll update with any NEW news.....

Monday, March 31, 2003

Hello Jake Fans!

We had a GREAT weekend. Saturday we finished cleaning up the old house and storing “JUNK” and HAULING “JUNK” to the DUMP! I cannot believe how much CRAP one couple can accumulate in 11 years! Jake spent Saturday with Nurse Chris and her Mom & Dad Judy & Jerry. I called to check on Jake and he politely stated that I could come and get him in a couple of days. What the?? Apparently he was having fun. Thank you guys very much!!!

Saturday night we had dinner with some friends Chris & Lisa and their daughter Katelyn(sp) It was a real treat because we haven’t been able to get out and BE NORMAL for a LONG LONG TIME.

Sunday we visited another wonderful friend of ours Mrs.Bev **SEE PHOTOS** Mrs. Bev & Mr. Bill (that old man Jake calls him) are dear friends and we don’t get to visit often, but got the chance to have dinner with Mrs. Bev. We had a wonderful dinner and dessert. We even all ventured out to WAL-MART just for fun. UUGGHH! Thank you Mrs. Bev for dinner, we love you!!

Today’s lab results are as follows:
WBC = 4.2
HGB = 10.6
PLT = 63,000 (YEP that’s what I said!)
ANC = 2394 (YYIIIIIIIIIIIPPPPPPIIIIIIEEE!!)

I have to rant a bit right now because I hate Broviac catheters. This is Jake’s 4th Hickman and the stupid thing ALWAYS flushes fine, but HE HAS ALWAYS HAD has sporadic problems with them pulling blood. SOOOOOOOOOO, this morning of course because I had Home Health come out extra early because we had places to go and THINGS TO DO, this morning of all mornings, it decided to give us a FIT! UUGGHH!!

We tried EVERY TRICK in the book, holding his breath, taking DEEP breaths, coughing, crying, yelling, holding him sideways, upside down, and changing the dressing, (YADDA YADDA YADDA you get the picture) AND NOTHING worked this time. So, Jake’s port had to be accessed. That went just terrific especially after he was already pissed off because we put him through THE RINGER with everything else. GGGGGGGGGGGGEEEEEEEEEEEEZZZZZZZZZZZZZZZ !!! When is enough ENOUGH for these kids? I’m just waiting for him to SNAP on everybody one day soon.

So, after that was done we ventured out and ran some errands, visited some of our favorite YMCA friends and played for a while. Jake played racquetball with his new friend Kim & JohnBouk it’s not John(space)Bouk, Jake says JohnBouk as one word, so that’s his name. John & his son Adam took us to lunch at Garry’s BBQ and it sure was yummy. Thanks guys, we had a blast and lunch was great! Thank you Jenny for the balloon and Mrs.Tomi for the goody bag. We appreciate you guys so much. We don’t know what we’d do without you all!

Still waiting on NY news, I’ll update as soon as I get any info. We have been EXTREMLY BUSY since we moved into the apartment. It seems like we keep going and going and going. I guess when you’ve got the chance you hit the ground running! That’s my motto!!

Thanks for stopping by and checking in on Jake, The prayers are very appreciated and we love you all.

XXOO

God bless and protect all of the armed forces fighting to liberate Iraq...

Friday, March 28, 2003
Hello Jake Fans!!

Well, I’ve made up a song about Prednisone… (to the tune of SMELLY CAT FROM THE SHOW FRIENDS) and it goes a little something like this….
Prednisone…
Oh Prednisone…
What have you done to my child?
Prednisone…
Oh Prednisone…
My child is eating me out of house and home…
Prednisone…
Oh Prednisone…
My patience is wearing thin
Blah Blah Blah Blah Blah!!!

OKY DOKY Then, I won’t quit my day job, cause I don’t have ONE HA. Strike that I’m a full time MOMMY/NURSE/COOK/HOUSEKEEPER/ACCOUNTANT. I forgot about that.

Well I’m in rare form this morning if you can tell, Jake woke up at 7AM wanting BREAKFAST. I talked him into a bowl of froot loops. He scarfed that up like it was NOTHING and then wanted BACON BACON BACON!! SO, I cooked him BACON and then he wanted LUNCH! BY this time it was about 8AM. Ummmmmmmmmmmmmmm…………………..I’m thinking the prednisone has GOT TO GO! BUT it’s not up to me; it’s up to the DOC. And we will see him next week for a revaluation of that crap.

Jake’s demeanor is good; he’s quite pleasant and seems to be in a good mood MOST of the time, until you piss him off. Unlike me oh yeah RRIIIIGHT…Anyway, he’s gaining more energy and we are trying to get as MUCH outside time as possible for some FRESH AIR…mmmmmmmm…mmmmmm…GOOD FOR THE LUNGS!

Home health came by this morning, Nurse Tina and the results are in…
WBC = 4.0
HGB = 8.5
PLT = 38,000 (BUMMER) HOPE THEY GO UP!!!
ANC= 2740 (GREAT NEWS)

We are FINALLY settled in and unpacked. I’m so anal, we were settled in after day #2. I just don’t know when to STOP; I’m like a machine I tell ya. Of course my body is SCREAMING MASSAGE!!!!!HOT TUB!!!!!! CALGON TAKE ME AWAY!!!!!!!! Truthfully, We had a lot of help and we are very appreciative!

This week we are in the planning stage for NY. Planning FOR what you ask? Well…we are planning for the trip up POSSIBLY THE WEEK OF APRIL 7th. Jake will have scans to find out the next step in his treatment will be. Jake is due for a CT and a PET scan. MIBG’s are out for the JAKESTER because never responded well to them. Now all children are different, BUT I FIRMLY BELIEVE THAT ANY NB PATIENT MUST HAVE AT LEAST 2 PET SCANS DONE ONCE A YEAR! Anyone needing an explanation on that please email me and you will get a big ole eyeball full!

All right, well we have an exciting weekend planned. We get to go clean up and get rid of all the garbage at our old house on Saturday. Sunday we are going to chill out and relax GREATLY NEEDED FOR OUR ACHING BONES!

That’s all the rambling/ranting/etc…etc… I’ve got for you all right now. Thanks for stopping by and checking in on the Jakester. And THANK YOU ALL FOR THE PRAYERS!!!!!!!! WE APPRECIATE AND LOVE YOU ALL SO MUCH!!!!!!!!!!!!!!!!

XXOO
Until next time….

God Bless and protect all of the armed forces fighting to liberate Iraq…..

~ Wenesday Update ~

Hey Y'all
Jake's labs look good..
WBC = 3.4
HGB = 9.7
PLT = 58K
ANC = 2448

ALL else is going well, we are trying to get as much outside time as possible. Jake still tires easily and we are gonna go broke trying to feed him.. PREDNISONE is seeeeeeeeeeeeeeeeew evvvvvvvvvvvvvvvilll.... Thanks for stopping by and checking in, I'll update again soon...XXOO

Tuesday, March 25, 2003
***NEW PHOTOS***

Hello Jake Fans!

Good Golly Miss MOLLY we have finally moved and settled in! WHEWWEEEEEEEE, I cannot tell you HOW exhausted we all are, BUT I have to thank some very special people who made this past weekend go VERY SMOOTHLY!

BIG FAT Thank YOU’S go to the following folks:
Mimi & Uncle Josh
Auntie Pat & Uncle Jeff
Chris
Lauren & Mike
Christy & David

You guys ALL made LIFE a lot easier for us, and we appreciate you very much and are very grateful for all your help!!!

OK, well we have settled into our temporary home, it’s noisy living in an apartment. We are used to the QUIET, but it’s only for a few months until our house is ready. Jake likes the apartment and loves the playground right across the street. He’s quite content, and we are very happy with that.

Jake’s off the TPN and eating like a maniac. While Mimi was here, (he loves her cheese eggs) his appetite kicked into HIGH GEAR! He asks for a “cooked breakfast” every morning now, very specifically cheese eggs, bacon and toast WHEW! Now, that’s what I’m talking about! I love it!!!!

Jake’s platelets are being unruly. He had to have some on Saturday, and yesterday’s labs were holding at like 60,000 something?? Anyway, I’m hoping his little body starts producing them soon. His WBC was 3.5 yesterday and his Hemoglobin was 8.9, so his ANC was looking good at 2100. He tires out easily and takes a few naps during the day, but otherwise he’s doing GREAT! Home health has been instructed to come out to draw labs this Wednesday and Friday. So for the medical news, that’s about it. Well alrighty then, that’s all I’ve got for now.

Thanks for stopping by and checking in on Jake and as always…THANK YOU for saying those prayers!

XO

~ GOD BLESS AND PROTECT OUR ARMED FORCES ~

Friday March 21st...

Hello again folks~

Well, Home Health came out this morning to draw Jake's labs. And the labs came back great EXCEPT for the platelets AGAIN! His Mimi is taking him to the hosptial tomorrow for the transfusion while we pack up and move out. UGH!

Prednisone Boy is back. The medicine has made a drastic difference. He's eating a little and even has more energy. But, the MEAN disposition is killing me. He goes from one EXTREME to another. UGH UGH UGH!!!!!!!!!!!

He's very glad to have his Mimi & Uncle Josh here for the weekend. I'll update with photos soon.

I will update when I have more news...

Thanks for stopping by and saying that prayer for Jake!
XO

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Wednesday, March 19, 2003

Hello Jake Fans!

Well, clinic was a breeze, chest x-ray looked great and all counts looked pretty good except for the platelets. The platelets stood at 17,000, so He received platelets downstairs in the out-patient clinic. They are always so nice to Jake. ***Doc says he can't feel the lymph nodes in Jake's neck anymore, and the knot has disapeared. Now that's what I'm talking about!!!!Can I hear a Praise GOD or a HALLELUJAH ON THAT ONE??? !!!!! ***

Does this mean that the chemo took care of these issues? I have NO IDEA. We will have to wait to see what the PET & CT say in NY in a few weeks. How about you all helping me PRAY that the chemo did the trick and these issues WON'T be an ISSUE anymore?? Thanks!

Before we headed downstairs...Jake received a special visit from Sam “the therapy dog” & Ms. Tucker today in clinic, and I believe he beat Ms. Amy in the game of Candy Land. Thanks guys for always being so sweet!

WBC = 3.7
HGB = 9.1
PLT = 17,000

ANC = 2886

This is all good for now, but the WBC is kind of FAKED due to the neupogen (GCSF). Tonight is his last shot; MAN did he get PISSED OFF last night! He asked me at like 5:30PM if he was going to get a shot, when I answered “yes” he hid from me for an hour and boycotted dinner all together. Well, when the time came after the EMLA had been on an hour, I held an ice pack over the spot and then gave him the shot. Not only did he not FLINCH, but he said “Just push it SLOW” and before he knew it, the shot was over and he was fine. He said, “That was much better Mommy”. So, I got the gold star last night for the “smooth” injection. What sucks is, that I had to stick him twice, the syringe wouldn’t budge the first time, and I did NOT want to FORCE it all in too quickly. He never even noticed, I use the 30 gauge insulin syringes and you can’t even feel them. Anyway, the second time around I was able to push it smoothly in little spurts….

Enough on that! Jake’s wiped out today, still having the diarrhea sporadically. Still taking the lasix, and the indicine for fluid retention. He’s still on the TPN at night as well. He weighed in at 16.9KG that’s good from 17.6 on Monday. Basically he’s about 36lbs. Getting somewhat back to normal. Whatever that IS?

More labs are to be drawn on Friday. I’ll update if I have the chance, we are moving this weekend, and things are going to be a little hectic. Jake’s getting excited about the move and we are relieved that it’s going to be over soon.

Please check in on our buddy Harrison , his surgery was a SUCCESS and he is officially tumor free!! YAY!! Praise GOD! He can now move forward in treatment and Sloan can rid him of this wretched disease once and FOR ALL!! We love you guys!!! And are thinking about you always!!!

Please stay tuned to this site for updates………Hey, Thanks for stopping by and saying a prayer for Jake. We REALLY appreciate it!XO

GOD BLESS AND PROTECT ALL OF OUR ARMED FORCES

Monday, March 17, 2003 **NEW PHOTOS**
Hello Jake Fans~

Happy St. Patrick's Day! I hope you all get to pinch someone you love, Brian got me good this morning, What a SKUNK...he thought he was soooo cute..well he is kind of cute isn't he?

We are home! YAY! Jake is SO HAPPY TO BE HOME AND SO ARE WE! Jake was released this morning from CMC. The whole way home he kept saying "I'm SO glad to be going home" while grinning from ear to ear. When we walked in the door, he noticed most of the house was packed up and immediatley went to his room to see what he had left to play with. WELL OF COURSE I left him (WAY TOO MANY) toys to play with. He is SO content playing in his room, in his house! Brian and I are just happy to see him smiling and being happy for once.

Jake's WBC dropped a little from 1500 to 900 we are thinking it's due to the antibiotics stopping. WHO KNOWS? I'm tired of guessing about it! Jake's going to be on TPN here at home during the night. Jake will be receiving the GCSF (neupogen) to keep boosting his white count as well. I'm not sure what the next step is, but I promise I will always keep you informed as QUICKLY as possible through this webpage.

Doc McMahon wants to see him Wednesday for labs, I'll update again after that clinic visit.

Special THANK YOU to the wonderful CMC Nurses who took such good care of Jake. We love you all and appreciate you putting up with us for 15 days straight!

And Special Thank you to the CMC Child Life Dept. Susan & Tucker can make Jake smile no matter what's going on. Thank you ladies for taking good care of Jake and being there for us. We love you guys!

And THANK YOU ALL FOR STOPPING BY AND CHECKING IN ON JAKE AND PRAYING! We really appreciate it very much..
XO

**Special Prayers for our little buddy Harrison he is having another major surgery tomorrow 3/18. Tomorrow is also Harrison's 4th birthday. Please help me pray for the surgery to be a success and for a quick recovery.....

Saturday, March 15, 2003
Hello Jake Fans~

Jake's White count is up to 1200! YAY! He's going to get platelets today because one of the medicines he's getting eats them. I think the platlet count was like 35,000. So, he's doing well. He ate a little bit of shredded cheese and a few goldfish crackers yesterday. He's still drinking his fruitopia and sweat tea. I spoke to him this morning and he sounds really tired. Daddy said they had a good night and I know Jake's glad to be hanging out with his best buddy in the whole world. I'll head back down tonight to releive Daddy for some much needed sleep.

I'm at home today packing. Not for a trip, (I WISH) but to move. Yep you are reading right! We are moving. We just didn't think we had ENOUGH stress in our lives at one time. HA! I'm doubled over with laughter right now...........UGH!

I'm hopeful Jake will be able to come home for a few days and hopefully he will understand what's going on. When he left, "his house" was fine...when he comes home, all will be packed up. I'm just glad I get to bring him home and not to the new place. I think that would relly do a number on him.

Anyway thanks to some of my GOOD friends they are coming over this morning and helping me pack up this place in preparation for the move next weekend. We have had an OUTPOURING of help and we are fine, thank the lord I don't know what we'd do without our friends. Thank you guys!

Anyway, we are moving to Charlotte closer to Daddy's work. We decided to move back in November and put our house on the market in January. It sold in like 36 days. I never thought it would sell that fast, so oh well...praise the lord right?

If you did not receive an email from me with the forwarding address & phone, email me and I'll pass it along.

Thanks for stopping by and checking in, I'll update again soon. THANK YOU FOR ALL THE PRAYERS, LOVE AND SUPPORT!
XO

Friday, March 14, 2003 8:48 AM EST
Jakes white count is on the rise! The count is 800!!!

He is still fever free and they are stopping 2 of the antibiotics. He is still taking the Imodium for diarrhea, but it is controlled. He ate 10 pieces of popcorn yesterday. That’s a start.

The visitor rule still stands. No visitors until further notice.

That’s about all for now, will update again tomorrow.

Keep praying for the WHITE CELLS TO GROW!

Auntie Pat

March 12 ** Wednesday Night update **
Hello Jake Fans~

I’m home again for the night, while Daddy and Jake are camping out together at the hospital. Thanks again to Auntie Pat for keeping us all straight on what's been happening, we love ya!

Day 18 from chemo….The Steroid MONSTER is BACK. UGH! WHOA what happened to my KID! Jake was put on the very evil Prednizone to relieve some of the fluid retention. After about one day of THAT CRAP I asked if there was anything else that could be given, thankfully there is…but I cannot remember what it is sorry, my brain is fried and I’m surprised I remember my own name sometimes! Here’s hoping tomorrow is MUCH better for Jake. Prednizone gives him HORRIBLE hot and cold flashes, not to mention one HELL of a heinous disposition. I’ve never been treated so badly. I don’t blame him, but GEEZ I can only take so much abuse here folks. He’s yelling at me one minute, kicking me out of the room and the next minute he’s begging me to snuggle him and rub his back (kind of reminds me of when I was in labor with him actually) YIKES!

So, the fluid is slowly coming off. Jake’s is weighing at 38.5 pounds. That’s quite heavy, and about a pound or two is water retention. He’s still not running fevers, but the meds are wearing on him in a lot of ways. He’s NOT eating anything but drinking his sweet tea and frutopia like a mad man. The TPN is going 24hrs and he’s still on antibiotics I’m probably going to spell these all wrong but who cares (amphiterrison-b, aclindamycin, amycacin, cephapine, and of course septra) He’s getting lasix every 12 hours and usually voids about 400cc’s. 240cc’s = 1 cup. This is a good thing; hopefully the fluid issue will be over soon. Jake will be on all the antibiotics at least until Sunday. His diarrhea is slowing as well and he’s going about 4 times a day now. Immodium is helping in that department. He received platelets today, down from 24,000 yesterday to 17,000 today. I thought it would be worse so I know he’s on the up-swing now. I’m hoping that white count rises on UP and gets him out of the hospital soon.

I have had several requests for visits with Jake, I hope you all understand the LESS people that are around him right NOW the BETTER. We will have you come visit us at home when he is well enough to receive visitors. I'm sure you all understand.

Special thank you to The WONDERFUL NURSES and CHILD LIFE Crew at CMC. Jake loves y’all and you guys are so special to us. Thanks for putting up with us these past few weeks!

Thanks to all that are stopping by to check in on Jake, we appreciate ALL THE PRAYERS!!

Will update again with any NEW news...
XO

Wednesday, March 12, 2003 8:32 AM EST
Jake is doing much better today. His white cells are starting to grow, they are at 300 today. He has not run a fever and he test negative for RSV! The doctors have started Jake on steroids to absorb excess fluids, which have turned him into a monster. Chanda says he is ‘Very Pissy’. He is still on Lasix as well.

I just wanted to give you a brief update with the good news. Chanda will update again tonight.

Keep praying for those white cells to grow.

Auntie Pat

Tuesday March 11th 7AM
Hello All~

Thank you for all the wonderful email and guestbook messages and prayers.

Before I left last night Jake asked one of his nurses for some Morphine. After about 5 minutes he started having uncontrollable eye movements. Doc believes that the fernnergine has contributed to these perinial eye seizures and the morphine kicks starts them up again. Jake litteraly cannot see straight. It's absolutely pitiful to watch. So, no more morpiine and hopefully the effects will wear off in a few days. Jake's only allowed to have benadryl and oral lortab from now on.

Jake's still retaining water but now, they are giving him lasix every 8 to get the fluid off his belly/lungs and we are doing chest PT which really pisses him off, but that is what we want. He's drinking his fruitopia pretty steadily and still have a nagging cough. He is still on 1/2 a liter of oxygen to help him breath a little eaier. Without it he breathes at 96 or 97% which isn't bad at all but, he's not taking really deep breaths and is still kind of panting.

Still no fevers, but still on every antibiotics known to man. We are hopeful for a White count in a few days. We are on 16 from chemo and have waited to day 23 before seeing any white cells grow. His labs show .1 one day and then .2 another, I'm hopeful we will see them JUMP soon. His platelets were 35 yesterday, I'm sure he will be getting platlets today.

That's all for now, I'll update soon or have Auntie Pat update again if anything changes. Thank YOU ALL for stopping by and checking in on Jake.

PS Thank you to all the wonderful nurses at CMC. Jake told Christy and Lynn yesterday they were really good nurses and about made us all start balling. What a sweet baby...

Monday, March 10, 2003 11:58 AM EST

Jake has again swelled up in the belly area and his breathing is strained. They have discovered the cause for the swelling is a lowered Albumin, a blood protein, which when low, causes fluid retention. They are giving him Albumin today to raise it’s level in his blood. The infectious disease group is going to investigate whether to start a breathing treatment to help the RSV.

Jake is drinking fluids, but not really eating. He is taking oral meds (Loritab) for pain, no more morphine. The Immodium seems to be working, he only had 2 bowel movements today. He rested much better last night, and hopefully will get better and better and better.

They still are not allowing visitors. No White Count = No Visitors.

Please pray that Jake’s condition improves and those cells start to grow.

Thanks to all the doctors and nurses working so hard for Jake!

GROW CELLS GROW

I’ll update again tomorrow unless Chanda calls in the meantime.

Auntie Pat

Sunday, March 9, 2003 7:06 PM EST
Update:

I just spoke to Chanda, Jake is doing better. They have put him oxygen and he is breathing much easier. They have also put him on additional antibiotics. They took another x-ray and it is 5% worse than yesterday. It seems the RSV has been categorized as pneumonia. They gave him Lasix and Jake urinated 400cc’s worth. His stomach went down and now he is sleeping comfortably.

I will update again tomorrow after I speak to Chanda.

Pray, Pray, Pray for those white cells to grow.

Auntie Pat

Sunday, March 9, 2003 4:25 PM EST
Hi everyone!

Jake has not run a fever all day; he also has not slept in 19 hours. He seems to be retaining fluid and his belly is getting big. They are going to put him on a morphine pump to try to alleviate some pain. He is having some problems breathing and they may have to put him on oxygen.

Chanda will try to call me later with another update and I'll update the page.

Please pray for Jake, that he starts to feel better and his white cells grow. Chanda and Brian appreciate all your thoughts and prayers.

Auntie Pat

Friday, March 7, 2003
Hello Jake Fans~

I'm home again just in time for some much needed straight sleep. Daddy and Jake are camping it out tonight at the hospital.

Yesterday it was FINALLY DISCOVERED upon the 3RD nasal wash that Jake tested POSITIVE for RSV. Not good for anyone without a white cell count. Yep, you guessed it....it NEVER went away. And yep, you guessed it...all I could think of were FOUR LETTER WORDS! (That I wanted to scream outloud)...(and should have)

Jake's fever is UP and DOWN like a ROLLERCOASTER, and it's driving everyone batty. The nurses are beside themsleves, because sometimes it just won't break. Even with tylenol it WON'T BREAK! UGH! No Motrin, because Jake's platelets have to be above 75,000 and today they were 35,000. So maybe tomorrow we can try motrin after he gets platelets. We are expected to be in-patient AT LEAST another week or more.

Jake is VERY PISSED because his hair is falling out everywhere and he does not understand why. I had to break out the tape and get it off of his pillow today, it looked like a cat had been laying there for a MONTH! He's never lost hair like this before, because he never had it. So he does not understand, and it breaks our hearts. I'm taking the clippers in tomorrow and Brian's going to trim it off, it's making him crazy for it to fall in his face. It's making Brian and I crazy watching him have to go through this.

Tonight Jake started this wretching cough. For almost two hours all he did was cough and gagg. We could not get it to stop. It's very frustrating watching your child suffering and NOT being able to HELP him in any way.

Today, I couldn't do ANYTHING right, he kicked me out of the room three times. I was NOT allowed to EAT, TALK, Watch TV or even READ in the room today. He's very sensitive to light and noise. Nothing made him happy today at all. He was miserable today, but quickly realized the morphine/benadryl combo worked quite nicely. He's pretty darn smart for a 4 year old.

I'm hoping and praying tomorrow's a better day, I HATE watching him go through this suffering. Please no visitors at this time. Jake's not even allowed in the play room. We can take him in the hall for walks if he feels like it, but that's it. He has to wear a mask and that makes him pant like a dog which brings on that cough. UGH UGH UGH!!!!!!!

Please help us pray Jake's white cells start growing. And he's stays comfortable.

Thaks for stopping by and checking in. And thanks for praying for Jake.
XO

Thursday, March 6, 2003 10:17 AM EST
Jake had another rough night last night. His mouth sores are still hurting as well as the consistent diarrhea keeping him awake. The Docs have put him on morphine to try to alleviate the pain and diarrhea. It seems to be helping a bit. He still has no white count so visitors are not an option. It is very important that Jake stay healthy as best he can, so outside germs need to be keep to a minimum.

Jakes hair is starting to fall out from the Chemo. He keeps telling Chanda “there’s hair everywhere, get it off!”. He doesn’t realize that it’s his.

As always, please keep Jake in your thoughts and pray for the WHITE COUNT to RISE.

Thanks for visiting
Auntie Pat

Tuesday, March 4, 2003
Hello All~

**Thanks Auntie Pat for keeping all of you updated for us, we love ya! **

Jake has been in such bad shape these past couple of days. I knew it was coming and was surprised we had the 5 wonderful fun filled days at home before all hell broke loose.

Sunday morning I watched Jake got straight down hill…FAST! HE all of the sudden spiked that all time favorite fever. THE NEUTROPENIC NIGHTMARE has begun.

Once admitted Jake continuously ran a fever of 102.5 – 103 for two days straight. NOTHING would bring that sucker down. Then the diarrhea started from all the antibiotics. Then Jake started these GUT-WRENCHING vomiting sessions for hours on end. The poor little guy has is literally coming out both ends. It’s heartbreaking, and has been uncontrollable, until tonight. NOTHING seemed to help, until I a LOW DOSE remedy of benadryl and fenegrine (sp)seemed to knock Jake in to a much-needed peaceful sleep. Jake literally has been awake up and down in and out of the bathroom since we’ve been admitted. We are both like walking ZOMBIES! AND WHO gets ANY rest at the hospital anyway?

All the Docs and Nurses are diligently working to make Jake comfortable as possible. I hope tonight is much better for my little man. Daddy is camping out tonight with Jake at the hospital, so I can catch up on my zzzzzzzzz’s so, you know I’m on my toes and don’t go and snap anyone’s head OFF by accident…………

We have to be very careful over the next several days and keep Jake well; he is obviously very susceptible to infection and WE DON’T WANT THAT! Please know that if we need anything, it is PRAYER for JAKE and his WHITE CELLS TO REBOUND QUICKLY. He’s strong and brave, but he’s been through an awful lot and this chemo combo has wiped him OUT!

I just broke down and sobbed today while Jake was puking his guts up over and over for the fiftieth time. And Jake would just look at me, with those big brown sad eyes and tell ME it was going to be OK. I mean…. can he be any sweeter?

The plan is to get the fevers, nausea/vomiting under control, and hide and watch those white blood cells grow. All Jake’s cultures have NOT grown any bugs, chest x-ray looks good. WE NEED THOSE WHITE’S!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That’s all from the heart tonight, I’m getting ready to fall face first into my favorite bed in the whole wide world. I’ll be heading back in the AM to relieve Daddy in so he can go to work. Please help us pray Jake’s fevers diminish, he STOPS vomiting and is able to have peaceful and well-rested nights/days during this stay.Thanks for all the support and prayers going up for us ALL!
XO

Tuesday, March 4, 2003 10:37 AM EST
Jake is still feeling really bad. They got no sleep at all last night, Jake was vomiting and had diarrhea all night long. His platelets have gone up but he still has no white count.

Please keep praying for Jake’s white counts to increase. That is so important!

Again… Please no visitors at the hospital, wait a few days then call first. Since sleep has been at a minimum please limit calls.

Thanks again
Auntie Pat

*********************
Monday 3/3

Jake is severely neutropenic (no white blood cell count) today, he ran fevers all night long and had diarrhea from antibiotics. He is very weak, has mouth sores and does not feel good at all. He will be in the hospital for 10-14 days. His platelets were 8000 when he arrived at the hospital, he had sever nose bleeds. He received platelets last night, and will receive red blood today. Dr McMahon has put him on TPN because he is not eating.

Please keep Jake in your Prayers, as you all know they are appreciated.

Please no visitors at the hospital, wait a few days then call first.

I will update again tomorrow.
Auntie Pat

Monday, March 3, 2003 8:58 AM EST
Jake is severely neutropenic (no white blood cell count) today, he ran fevers all night long and had diarrhea from antibiotics. He is very weak, has mouth sores and does not feel good at all. He will be in the hospital for 10-14 days. His platelets were 8000 when he arrived at the hospital, he had sever nose bleeds. He received platelets last night, and will receive red blood today. Dr McMahon has put him on TPN because he is not eating.

Please keep Jake in your Prayers, as you all know they are appreciated.

***** Please no visitors at the hospital, wait a few days then call first.*****

I will update again tomorrow.
Auntie Pat

Sunday, March 2, 2003
Jake spiked a fever of 102.5 heading to the hospital. Will be out of touch via email.

Will have Daddy or Auntie Pat update with news. Jake's feeling LOUSY and weak.

Please keep Jake lifted up in prayer for WHITE COUNTS TO RISE AND NOOOOOOO INFECTIONS TO OCCUR!

Thank you!
XO

Friday, February 28, 2003
Hello Jake Fans!

Jake’s very tired, and wears out easily. NO ENERGY..He’s eating good and drinking well.

The labs are in Today:
WBC= .3 (300) Normal is 4,000-1,000
HGB=8.7
PLT=35,000
YIIIKKES!

Doc says he wants to re-check Jake ‘s labs on Monday. MONDAY???HUH?? I asked the nurse if he saw the counts and she verified he did. (Actually a few of my favorite expletives flew out of my mouth, no need in repeating them though) You can BET Jake will be getting probably blood & platelets on Monday. UUUUUUUGGGGGGGGGHHHHHHHHHHHHHH!

Jake started GCSF on Wednesday night, let me tell you how much fun that is. Jake really gets PISSED OFF! Trust me it takes Daddy & Mommy together to give a 4-year-old 36.5lbs of Jake a shot. UGH! Yep, I have the 30 gauge needles, yep, I push it slow, yep I use ice and EMLA, BUT THE FREAKING MEDICINE BURNS LIKE A @#%*! Get the picture? Nope Jake does not understand why he has to get the shots, and it is very difficult trying to explain EVERYTHING TO A VERY SMART 4 YEAR OLD!

How long will he have to get the shots? Until Doc McMahon says his counts are where the Doc wants them. Does it rip our heart out do have to do it? Yep! Do we have a choice? Nope! If you have noticed a change in my tune I’m sorry, by that’s the way it’s gonna be from now on folks. Brian and I are TIRED of watching Jake having to SUFFER! I have no energy right now to try and be upbeat or sugar coat it anymore. Am I mad? Yep! At who? Don’t know? I wish I had someone to blame or point the finger at for this……. but I don’t it’s a part of Life and it SUCKS! I know all parents or loved ones feel somewhat like I do because when your child or loved one is suffering and your heart is broken how else are you supposed to feel??

Folks we do the best we can EVERY SINGLE DAY. We PRAY TO GOD FOR STRENGTH AND THANK GOD everyday for EVERY MOMENT with Jake. Every morning we force ourselves out of bed and get on with our day. I appreciate all who stop by, even the ones that don’t sign the page. I want you to know you DON’T HAVE TO KNOW WHAT TO SAY…Say anything…

Brian and I thank you for all the prayers and encouragement and most of all reading my ranting sessions from my heart & soul.

XO

PS
Special Thank you's to:
Sandy for lunch and making Jake smile yesterday. Being my friend and helping me this week!

Welcome HOME to our Buddy Harrison, he's home and catching a NC Break from NY!! YAY Harrison we love you guys!

Thank you John and all at the YMCA & Godstock for all your support and friendship!

Tuesday, February 25, 2003

Hello Jake Fans!
We are HOME! YAY! Jake finished up with his Adriamycin and Vincristine around 11AM, got another hit of Zofran, and we hit the ground running! I don’t ever look back and I’m always in a big hurry to get the HELL outta there!

Jake’s ALOT PUNY today. He’s pretty much stopped eating. He did ask me for Wendy’s chicken nuggets and he ate about ½ of one nugget. He says he feels fine, but I know better. I’m hoping I’ll be able to keep him hydrated well over the next couple of days. He’s weighing in at a whopping 36.5 lbs!! That’s the most he’s ever weighed. I was happy to see it, but I’m sure it won’t last. At least he was nice and beefed up before this round of chemo. He looks great and has the most chunky monkey cheeks I’ve ever seen. ** SEE PHOTOS** Special thank you to all the CMC nurses that took such good care of Jake this week. We apreciate you all very much!

Home Health is supposed to be coming out to the house on Friday for labs, I’ll update when I have more news.

To everyone reading this page, thank you for all the love, support and prayers.

XO

Sunday February 23rd
Hello Jake Fans!

Jake is doing well so far with the chemo combo. Eating his mini stock pile of goldfish crackers and frozen pancakes his Daddy brought him. Brian pulled hospital duty for me Friday & Saturday night. Jake wanted me out of their HAIR! Ahhhhh... with a little sleep under my belt, I should have a much better disposition for the next two days. Yippie for the hospital staff right? AND..Thank you Brian, I love you for everything!

I'm headed back down to hang out with my boyz today. Thank you Auntie Erin (Harrison's Aunt) for stopping by to visit and play, and for all the goodies. Jake made me POP the popcorn you brought him last night! Thanks to Kenna & Cindy for coming and the new stuffed dog is soo cute. Jake named him after another friend of our's dog "Gunner". Thank you to Our friend John Bouk, for being here for us this week. Thank you to Nurse Christy & Hubby for coming in on your day OFF to see Jake and bringing him the bear. All you guys are awesome and we appreciate you all being so kind and thinking of all of us.

Also The Courtney's would like to wish a Happy Birthday to one of our very close friends Uncle Tommy. Uncle Tommy is in the Navy and his ship has headed over to the gulf to prepare for war. Tommy we are all thinking of you, hoping and praying you get home soon to Kori and the boyz. HAPPY BIRTHDAY! We love you!

I'll update when we are HOME!
XXOO

Friday, February 21, 2003
Hello Jake Fans~

First off let me thank Aunie Pat for updating this page yesterday. And thank you everyone for your support and PRAYERS. I have felt a lot of powerful energy around us all this week. Your words of kindness and encouragement are an awesome testimony from above…

Let me back up a bit….
Jake was eventually going to get this chemo combo after the surgery in NY. He was not going straight into antibodies from the surgery. I knew in January that he would get this round, just didn’t plan on it being done this way. AND did not know about the possible problems administering it through Jake’s port-a-cath. I don’t think anyone thought twice about it at that time. I guess I was just hoping to have the surgery and have that part put behind us for once. After this treatment, and he SLOWLY recovers from it I’m sure follow up scans will be preformed in NY to measure the success of it. We of course will be able to actually see the small knot on his chest and feel the lymph nodes HOPEFULLY fading away.

Yep this week has definitely SUCKED! Jacob begged me for 2 hours not to let them put a Hickman in him. He did not want a “tubie” and was very upset about this. You see, this is his 4th one and he could NOT understand WHY the medicine could not be given to him through his port? I had to look him in the face and choke back the answer to “Mommy why do you look so sad”?

I held it together until they wheeled him away for the procedure. I’m not very good at showing my vulnerable side, but I cannot hide my broken heart anymore. My heart feels like it has been ripped out of my chest and STOMPED ON!

I want everyone to understand I have never blamed God for Jake’s cancer. Right now, we are leaning HEAVILY on God and trust in him. I cannot explain the depth of pain Brian and I have endured over the past two years, but I know that it is very real and it hurts very badly. I want to run away and hide; I want to scream I HATE CANCER AND LIFE IS SO CRUEL! But who doesn’t already know that, or hasn’t ALREADY heard that one right? I want to blame someone, but I can’t. There is no one to blame. There’s a reason for everything. We are taking it ONE day at a time. That’s all we can do….

Jacob’s chemo was delayed because he spiked a post-op fever (after the Hickman was placed) and the usual 24-hr lab cultures have to be drawn and watched to see if anything grows. After the 24hrs, which would be about 11:30PM Friday night, they would start to hydrate Jacob in preparation for chemo and start the chemo around 10AM Saturday morning.

Please join us in lifting Jacob in prayer and ask GOD specifically for Jake’s strength and resilience in this fight. This chemo combo is beyond powerful it’s scary. Brian and I appreciate all your love and prayers. It means the world to our family. I’m out of touch at the hospital, but Auntie Pat or Daddy will update the page again soon…

Thank you all again for the support.

PS
Kenna~
Jake wants you to come and visit him in the hospital. He continously talk about you and would love a visit.
XXOO

Thursday, February 20, 2003 8:27 PM EST
Update from Auntie Pat;

Jake was admitted to CMC on 2/19 to start Chemo on 2/20. Change of plans, Dr McMahon felt that Jacob needed a hickman inserted due to the type of chemo he will be receiving, if the chemo leaked from his port it would burn his skin. The hickman is the safer method. Jake will be receiving 3 types of chemo for 72 hours (adriamycin andvincristine). He is also getting cytoxin on top of the chemo. The surgery for the hickman went well and he still has his port.

Chemo starts tomorrow about 10:00am and should finish Monday morning. Jake is not happy about the hickman being placed and does not understand why they could not use the port. He does not want the tubies (what he calls the hickman, he does not want to be in the hospital and wants to go home. Chanda has no comment. All the Courtney's favorite nurses are on duty this week.

Chanda would like to thank John Bouk for his friendship and support and for being there for her today. Also Janet and Eileen for the cookies that they are enjoying this evening

Chanda has no email access so Daddy or I will update the page for the next few days. Chanda will get relieved by Brian Friday night and she will update then.

As always all your prayers are appreciated. Thank You!

Auntie Pat

Tuesday, February 18, 2003
OK well, forget the NY trip altogether. Doc McMahon & Doc Kushner have decided to get Jake started on a 3 day round of chemotherapy to reduce the progression of NB they feel is evident in his neck and chest. There are two lymph nodes in Jakes throat that are enlarging, and a knot in Jake’s chest we’ve been watching appear and disappear for four months now. What does this mean? Hell if I know. Am I giving up? NO WAY! Are we going to try this to see if it controls it so we can get at least to the antibody stage? YEP!

We are pretty numb at this point but then again nothing really shocks us too much anymore. Jake told me God is taking care of him. I believe it. I believe there is a reason we are still here in NC. I believe it’s God’s way of saying NO to the surgery. I believe there is a reason for everything and I’m so grateful to have Jacob here with us today.

I never thought I’d see him turn 4 years old this January. I know that’s not what you want to read, but this is my journal from my heart. I remember thanking god over and over in my mind during his party for giving us that day to celebrate.

I have a lot of feelings I don’t share on this page. One of them is the grief we have been carrying around everyday. Brian and I have HAD to force ourselves to be faced with the fact that NB is a bitch and can STEAL our baby and we have absolutely no control over it or anything ever. And folks, that just FREAKING (for the lack of one of my favorite words) SUCKS! And it’s unfair and how much more vulnerable can we get? How strong can we be? How much more humble can we get? I’m telling you after two years of this, it’s wearing us down to a little bitty nub. I draw every BIT of my strength every time I look into Jake’s eyes. He’s a fighter just like me; HE’S A MEAN LITTLE WHIPPER HEAD! I’m not ready to give up, and NO you can’t have him yet GOD!

The highs and the lows are inconceivable. We say we are fine, but inside we want to scream, stomp and lay down and throw a fit because we are SO MAD that our child has to suffer and suffer and suffer.

Jacob is being admitted to CMC tomorrow afternoon for 3 days of chemo to hopefully get this MONSTER under control. Once his counts re-bound, I’m sure we will make plans for NY once again to see where he stands. Until then, please pray for my baby. And all the other children that have to suffer any horrible life-threatening disease. Brian and I appreciate your prayers and friendship and words of encouragement. They mean the world to us.

XO

** YEP IT'S ANOTHER TRAVEL UPDATE **Tuesday February 18th
Well our flight today was cancelled, AGAIN! UGGGHH! So Yep, you guessed it we have another flight for tomorrow morning Wednesday the 19th. I'm PRAYING HARD WE GET TO FLY TOMORROW!!!Thanks for checking in and continuing to say those prayers!!

Monday, February 17, 2003
**NEW BATH TIME PHOTOS**Hello Jake Fans!

BBRRRRR !! ICE ICE GO AWAY! I DON’T CARE IF YOU EVER COME BACK!

LORDY can I just tell you I am SO tired of this weather! We have lived here for 7 years now and I’ve had ENOUGH SNOW, ICE, and LOSS OF POWER ETC! (We have power, I’m just venting)

For the record, I want to apologize to MOTHER NATURE for calling her an EVIL WITCH a few weeks ago (even though she REALLY is) Obviously our flight to PA has been canceled due to the blizzard. SOOOOOOOOOOOOOOO we are going to try again tomorrow afternoon at about 4:30PM. Who knows? All we need now is A LOT of prayer to GET US UP THERE BY WEDNESDAY!

We are fine, plenty of snuggle sandwiches to share here. I was officially the cheese for the first time ever today! YAY!!

So far we have been staying warm, watching lots of cartoons AND played GO FISH until we are blue in the face. It’s REALLY funny though because Jake will show you what he has, but don’t worry WE ALWAYS LET HIM WIN! We are all enjoying the day together as a family and relaxing and trying not to stress out too much...

I will post an update when I know for sure we are leaving, and if I don’t have time…I’ll update you from up North. Thank you all for checking in and saying those prayers for the Jakester!

STAY WARM!
XO

Happy Valentines Day!
~~VALENTINES UPDATE~~
Hello Jake Fans!

Well the chest x-ray looks good, Jake sounds A LOT better and his counts are even better. Platelets are 109,000 up a whopping 30,000 from Monday.

We are leaving for NY on Monday. Flying out around 3pm, will arrive in Philadelphia around 4pm. And the best part is that a HELICOPTER will be taking us into NY. How cool is that? I cannot wait to see Jake’s face. Jake LOVES HELICOPTERS! I bet you he has a BAZILLION or so in a collection. He has the really cool HESS 2001 helicopter he got from some friends; he flies it all over the house. I’m telling you he’s gonna flip!

Surgery will be on FRIDAY the 21st. I KNOW I KNOW!! COME ON WITH IT!! But, Apparently the surgeon was sick (they are allowed to get sick and be out of work… I know this) and had to re-arrange his schedule bless his heart. Anyway, that’s my story and I’m sticking to it!

I just realized that it's already been a year since we found out Jake relapsed. I can't believe it. Where has the time gone? Man this week has especially WORN me to a FRAZZLE!! I need prayers for STRENGTH please!

THANK YOU VERY MUCH FOR continuing to keep Jake in your prayers. I’ll update from the North!

Prayers also needed for these children and their families:
The Rainbow Kids

Thursday, February 13, 2003 HAPPY VALENTINES DAY EVERYONE!!!! we hope you will all receive MANY MANY SNUGGLE SANDWICHES FROM THE ONE'S YOU LUV...

Okay, well on the home front Jake is doing well. Eating and drinking AND oh yes acting like a LITTLE MAINIAC. He’s supposed to get a chest x-ray tomorrow, just as a follow up from last weeks RSV crud. I’ll keep ya posted.

As it stands we are due in NY on the Wednesday 19th (our 10 year wedding anniversary YAY BRIAN & CHANDA MADE IT 10 YEARS!!!!!!!!!!!!!! CAN I GET A WAHHHHHHHHHHHHHHHOOOOOOOOOOOO on that one?? I’m here to tell you folks, LOVE CONQUERS ALL!) and surgery is set for Thursday the 20th. We have not met with LaQuaglia yet, therefore are not aware of how involved this surgery will be…how long etc…. I will advise on that once I know.

Other wise it’s been a great week here at home trying to nurse Jake back to health and oh yeah…FIGHTING with the insurance company and HOSPITALS for STUPID STUPID STUPID mistakes made on their PART!

I should be spending this quality time with my child, instead I’m FORCED to fight with them over and over again AND DO THEIR JOB, POINT THEIR ERRORS OUT AND HAVE THEM CORRECT THEIR MISTAKES UUUGGHH!!

NOW I am MAD AS HELL and I’m NOT TAKING IT ANYMORE!! I have filed a formal complaints against both institutions and am taking actions higher and HIGHER!

So there!

Yes folks I STILL feeling like this!

PS
Thanks for stopping by and checking in on Jake and SAYING THOSE PRAYERS!!!

Tuesday the 12th **NEW PHOTOS**
Well, the respigam (IV MED) was NOT given. Respigam is a preventative for RSV so DUH why should he get it UNLESS his immuno-globin levels are LOW. So we drove to Charlotte for nothing. And possibly might have to go back tomorrow if the levels are low.

We are still WAITING to hear if Jake's immuno-globin levels are low enough to receive it. If the levels are normal he will not get any medicine and he will have to fight it out with RSV. He's MUCH better today and seems to have more energy and eating pretty good too. It's all in GOD'S hands folks, we are leaning on him BIGTIME!
AND YES I STILL FEEL LIKE THIS!

***Monday afternoon Update***
And the surgery verdict is....CANCELLED and RE-SCHEDULED for the FEBRUARY 20th! I’ll update on that one, when we know for sure Jake will be having surgery once and for all.

Jacob HAS tested POSITIVE for Respiratory Syncytial Virus(RSV) It's fatal for newborns and CAN be fatal to immuno-suppressed children.

RSV is highly contagious. Each year, up to 50% of infants are infected. Transmission occurs by touching an infected person, and then rubbing your own eyes, nose, or mouth. The infection can also be spread through the air, by coughing and sneezing. RSV can survive for 4-7 hours on surfaces such as cribs and countertops. Transmission may be prevented by standard infection control practices, such as hand washing.

The GOOD sign is that Jake’s counts are better than last week, so Doc McMahon thinks that he’s on the “tail end of it”.

The "CRUD" IS EVIL AND IT MUST BE DESTROYED!!!!!!!!!!!!

Do me a favor and send up a prayer for Jake PLEEEEEEEEAAAAAAAASSSSSSSE.

I’ll update when I’m sane again, which may be NEVVVVVVVEERRRRR!

*******Monday MORNING Update**********

UUUUUUUUUUUGGHHH!!!!!!!!!!!!
Jake was seen this morning in clinic, labs were drawn, and a chest x-ray was done. Also the ugly ole’ “RSV” test was done (that one was fun) Jake WAS NOT a HAPPY little man after having salt water solution forced in his nose and SNOT SUCKED back out via a syringe. WHEW!! talk about TRAUMATIC!

Monday's counts...
WBC=4.1
HGB=11.1
PLT=74,000
ANC=2173

THANK you ALL for stopping by and saying those prayers for the Jakester. We really appreciate it very MUCH!

Sunday to ALL OUR FRIENDS
I received this email this morning from a friend, and was asked to send it to all my friends, but there are SO many of you who read this page...I consider you ALL my friends. So, I just posted it here from US to YOU! Thank you always for all your continued support, love and friendship.... Have a Great Sunday!

To My Friends
If you should die
before me, ask if you
could bring a friend.
-- Stone Temple Pilots

If you live to be a hundred,
I want to live to be
a hundred minus one day,
so I never have to live
without you.
-- Winnie the Pooh

True friendship is
like sound health;
the value of it is
seldom known
until it is lost.
-- Charles Caleb Colton

A real friend
is one who walks in
when the rest
of the world walks out.
Don't walk in front of me,
I may not follow.
Don't walk behind me,
I may not lead.
Walk beside me and
be my friend.
-- Albert Camus

Strangers are
just friends waiting to
happen. Friends are the Bacon
Bits in the Salad
Bowl of Life.

Friendship is one mind
in two bodies.
-- Mencius

Friends are God's way of taking care of us.
I'll lean on you and
you lean on me and
we'll be okay
-- Dave Matthews

If all my friends were
to jump off a bridge,
I wouldn't jump with them,
I'd be at the bottom to
catch them.
Everyone hears
what you say.
Friends listen to
what you say.
Best friends
listen to what you don't
say.

We all take different
paths in life,
but no matter where we go,
we take a little of each
other everywhere.;
-- Tim McGraw

My father always used
to say that when you die,
if you've got five real friends,
then you've had a great life.;
-- Lee Iacocca

Hold a true friend with both your hands.;
-- Nigerian Proverb

A friend is someone who knows
the song in your heart
and can sing it back to you
when you have forgotten
the words.;
-- Unknown

AND last but NOT least…. I’ve added one…

Friends are angels who guide you through life.
--unknown

Friday, February 7, 2003
HALLELUJAH !! I'm Sending out A BIG FAT THANK YOU TO MY NEW BEST HTML FRIEND JERRY FOR FIGURING OUT HOW TO GET OUR BACKGROUNDS INTO THE NEW CB PAGE SET UP!!! THANK YOU THANK YOU THANK YOU JERRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And if anyone else needs the code, email me and I'll pass it along. Hopefully Mrs. Russo will post it on her HTML basics page for all soon???? Hint Hint....

Okay well, the Jakester is STILL coughing. UGH! I think the poor kid thinks I'm trying to poison him because now he RUNS and HIDES from me when he sees me headin for the TRIAMINIC. I picked up a new cough medicine today, we'll see if that helps. Still NO FEVER, and his appetite is coming around. YAY!

He’s got an appointment to see Doc McMahon on Monday morning for a quick check up and CBC. HOPEFULLY all will be good enough to make plans for headin NORTH!

Gotta run….Hopin to have some fun this weekend. I hope you do too! Thanks for stopping by and checking in on Jake and saying THOSE PRAYERS!!!!

XO

Friday 2/7/2003
Hello All-
My Ranting session was deleted this morning, CB has had some problems with their servers. Anyway, I'll update again when I have any news.
Thanks for stopping in and checking on Jake!

Monday, February 3, 2003
**UPDATE ON SURGERY!!**

Surgery has been postponed by one week because Jake has CRAPITETUS. Yep, the common cold (I HOPE THAT’S ALL IT IS) and it’s hammered CRAP out of his counts..

WBC=1.7
HGB = 9.9
PLT =58,000
YIKES!

NO fever, vomiting, diarrhea, runny nose etc yet… just that tickling cough so far. Anyway stop the press cause we are staying right here in NC for another week. Jake’s surgery has been re-scheduled for VALENTINE’S DAY. We are going to be making arrangements for travel next week. We need to be there by Wednesday the 12th for labs etc.. I’ll update everyone, as it gets closer. Until then, please please please HELP US pray that this crud he has DOES NOT TURN INTO A MONSTEROUS INFECTION LANDING HIM INTO THE HOSPITAL FURTHER POSTPONING THIS SURGERY!

We know and trust in the lord above and in our hearts that EVERYTHING happens for a reason....

I appreciate all your prayers and support. We love reading the encouraging words you all leave in the guest book. Until next time …

PS....
Email from Doc Kushner just in stated 1/21, the HVA (urinary markers) Jake's was 18 (normal =19) and VMA (urinary markers)Jake's was 4 (normal =9). This is AWESOME NEWS!!! PRAISE GOD!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello Jake Fans!

Saturday was SUCH a bust, I was beyond any excitement, I haven’t felt that bad in a long time. So we hung out and watched movies. Daddy nurtured me the best he could, every time he’d come near me I think he thought he was going to loose a limb YIKES! Sunday was a little better; I opened the blinds and saw how pretty it was outside. What’s that I said…do I see sunshine and hear birds singing?? Jake begged us to take him to the park so we did of course. Wild horses couldn’t drag me away, we had a blast and Jake made us swing him for like 2 hours. **SEE photos** We’d build sand castles and he’d stomp them to mush. It was a blast! All I kept thinking was thank you god for giving me this day of happiness with my family..

Well today was an absolutely BEAUTIFUL day. Mother nature is such an evil witch because it was like 70 degrees outside. I thibk she's going to SLAM us with SNOW again ON FRIDAY ...I mean COME ON! PICK A TEMP WOULD YA?!? I was planning on taking Jake to the park but I noticed that he started this NAGGING cough. OOHHHHHHHHHHH NNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO! Not now, NOT THIS WEEK! NOT 4 DAYS before SURGERY!!!!! UUUGGGHHH!!!!I panicked (DUH). I called Doc McMahon and rushed him in this afternoon. TO no avail, it’s just a cold! GIVE HIM AN ANTIBIOTIC! I got the usual (are you psychotic look from him) answer, he said NO. I’m over it now, but I think I have suffered a completed meltdown today… UGH! Doc said let’s wait and see what this is, it’s probably a cold since there’s no fever, runny nose or vomiting, diarrhea etc…So we packed it up, and headed straight into 5:00PM Charlotte traffic. I was bound and DETERMINED to take my boy to the park; we were going to have some FUN if it KILLED ME! Well, the parks all close in Kannapolis at 5PM, so that just SUCKS. So much for that, what a bummer huh?

Brian says I shouldn’t keep second guessing myself, but now I feel guilty because we could have been at the park not at clinic. I can’t help it…I’m just a MOM! UGH!!!

Okay that’s enough ranting for the day. I appreciate you all stopping by and checking in on the Jakester, he’s the world to us and we are so grateful to have so many friends who care so much about all of us. Thank you for all the prayers and encouragement.

If you have a chance, please check in on these guys and leave an encouraging thought on their page.

Harrison This family needs LOTS of PRAYER, possible NB has returned to Harrison's bone marrow.

McKenzie For no more complications on her third transplant.

Autumn For clean scans this month.

Morgan For a SPEEDY and successful transplant at Duke.

Kenna To get better quickly.

Miranda Just because she's so dang CUTE. And she's Finally catching a BREAK!

Ryan For clean scans this month.

Spencer For continued health and happy times at HOME!

Jack For his strength and resilience during radiation treatments at St. Jude.

Michael Congratulations on a successful transplant.

Julia For a successful week of tests at Duke.

Andrew For a successful week of testing at Duke.

Zack For a treatment plan that makes sense and WORKS!

XO

Monday, February 3, 2003
*********UPDATE ON SURGERY!!********

Surgery has been postponed by one week because Jake has CRAPITETUS. Yep, the common cold (I HOPE THAT’S ALL IT IS) and it’s hammered CRAP out of his counts..

WBC=1.7
HGB = 9.9
PLT =58,000
YIKES!

NO fever, vomiting, diarrhea, runny nose etc yet… just that tickling cough so far. Anyway stop the press cause we are staying right here in NC for another week. Jake’s surgery has been re-scheduled for VALENTINE’S DAY. We are going to be making arrangements for travel next week. We need to be there by Wednesday the 12th for labs etc.. I’ll update everyone, as it gets closer. Until then, please please please HELP US pray that this crud he has DOES NOT TURN INTO A MONSTEROUS INFECTION LANDING HIM INTO THE HOSPITAL FURTHER POSTPONING THIS SURGERY!

We know and trust in the lord above and in our hearts that EVERYTHING happens for a reason....

I appreciate all your prayers and support. We love reading the encouraging words you all leave in the guest book. Until next time …

PS....
Email from Doc Kushner just in stated 1/21, the HVA (urinary markers) Jake's was 18 (normal =19) and VMA (urinary markers)Jake's was 4 (normal =9). This is AWESOME NEWS!!! PRAISE GOD!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hello Jake Fans!

Saturday was SUCH a bust, I was beyond any excitement, I haven’t felt that bad in a long time. So we hung out and watched movies. Daddy nurtured me the best he could, every time he’d come near me I think he thought he was going to loose a limb YIKES! Sunday was a little better; I opened the blinds and saw how pretty it was outside. What’s that I said…do I see sunshine and hear birds singing?? Jake begged us to take him to the park so we did of course. Wild horses couldn’t drag me away, we had a blast and Jake made us swing him for like 2 hours. **SEE photos** We’d build sand castles and he’d stomp them to mush. It was a blast! All I kept thinking was thank you god for giving me this day of happiness with my family..

Well today was an absolutely BEAUTIFUL day. Mother nature is such an evil witch because it was like 70 degrees outside. I thibk she's going to SLAM us with SNOW again ON FRIDAY ...I mean COME ON! PICK A TEMP WOULD YA?!? I was planning on taking Jake to the park but I noticed that he started this NAGGING cough. OOHHHHHHHHHHH NNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO! Not now, NOT THIS WEEK! NOT 4 DAYS before SURGERY!!!!! UUUGGGHHH!!!!I panicked (DUH). I called Doc McMahon and rushed him in this afternoon. TO no avail, it’s just a cold! GIVE HIM AN ANTIBIOTIC! I got the usual (are you psychotic look from him) answer, he said NO. I’m over it now, but I think I have suffered a completed meltdown today… UGH! Doc said let’s wait and see what this is, it’s probably a cold since there’s no fever, runny nose or vomiting, diarrhea etc…So we packed it up, and headed straight into 5:00PM Charlotte traffic. I was bound and DETERMINED to take my boy to the park; we were going to have some FUN if it KILLED ME! Well, the parks all close in Kannapolis at 5PM, so that just SUCKS. So much for that, what a bummer huh?

Brian says I shouldn’t keep second guessing myself, but now I feel guilty because we could have been at the park not at clinic. I can’t help it…I’m just a MOM! UGH!!!

Okay that’s enough ranting for the day. I appreciate you all stopping by and checking in on the Jakester, he’s the world to us and we are so grateful to have so many friends who care so much about all of us. Thank you for all the prayers and encouragement.

If you have a chance, please check in on these guys and leave an encouraging thought on their page.

Harrison This family needs LOTS of PRAYER, possible NB has returned to Harrison's bone marrow.

McKenzie For no more complications on her third transplant.

Autumn For clean scans this month.

Morgan For a SPEEDY and successful transplant at Duke.

Kenna To get better quickly.

Miranda Just because she's so dang CUTE. And she's Finally catching a BREAK!

Ryan For clean scans this month.

Spencer For continued health and happy times at HOME!

Jack For his strength and resilience during radiation treatments at St. Jude.

Michael Congratulations on a successful transplant.

Julia For a successful week of tests at Duke.

Andrew For a successful week of testing at Duke.

Zack For a treatment plan that makes sense and WORKS!

XO

Friday January 31st

**I know the page is distorted. CB decided to make changes** I have no control over Caringbridge, it's a free service and I'm just glad to be able to use it to update you all...If ANYTHING can be done about it, my dear friend Chris Russo will figure it out, she's aware of it and is working on it. She's the Queen Web Mistress!!GO CHRIS GO!!

~~NOTE~~ If anyone reading this goes to their page and has a background linked from another site and tries to "edit the entire page" the background will be null & void or very distorted. AND you will get this banner at the top of your page for advertisement, plus a 1" white border and SMALLER TEXT. If you "add a new journal entry" I think you will be okay...unless you tell me other wise...**

Hey you Jake Fans!

How the HECK are YA? Today has been a good day. Despite the cruddy weather outside and my feeling like complete CRAP, Jake decided he wanted to go swimming at the YMCA and I gladly obliged him. We were in the lobby checking in and he met a new friend named John. This boy looked to be about 7 or so. Jake looked right at him and said “Hey there! MY NAME IS JAKE AND I CAME FROM GOD”? I mean how cute is that? John said “Oh yeah Jake, I came from God too, are you here to swim?” So off we went to the pool. John & Jake had a blast in the pool together. It was completely worth seeing the smile on his face and hearing the laughter was the best part. While I was watching my little fish having so much fun, I was thinking over the last two years how many times have I witnessed this complete and utter happiness…not many.

I worry about how happy he is. I worry of COURSE about a lot of things on TOP of NB being the monster that it is. I wonder is it ever going to end? How many more surgeries? How many more chemotherapy treatments? How many antibody treatments? BLAH BLAH BLAH and YADDA YADDA YADDA… We will never know. All I know is that as long as Jacob is able to FIGHT I’m right there by his side. And it's ALL IN GOD'S HANDS! We've given it all to you Lord, we are leaning on you everyday!

Well after going swimming, Jake decided he wanted to go rent a Blockbuster movie. This is one of his favorite things to do. So off we went to Blockbuster video. Jake always rents the same movies. Pokemon Pokemon POKEMON! Anyway after much debate we FINALLY reached the counter and my cell phone rings. It’s my friends at CAN and they have a flight for us next week! YAY! So as I’m trying to check out at the counter, pay for the videos, AND talk to Corporate Angel I notice Jake is DIGGING in the ICECREAM FREEZER. I motioned for him to STOP; he ignored me like I wasn’t even standing there. I stomped my feet (like an IDIOT)to get his attention; he looked at me and SHRUGGED HIS SHOULDERS! Before I knew it he had an ICECREAM OUT AND WAS UNWRAPPING IT! What are you doing I asked? He said, ”I’m eatin an ice-cream”. I guess I must have looked quite (stupid) funny cause the people behind the counter and the lady behind me in line were busting a GUT with laughter! I could not believe that little SKUNK did that. The whole way home all I heard was “what’s the BIG DEAL MOM?” And you know what? What is the big deal? My point here is that I have got to Start CHOOSING my battles! UGGGGGGGGGGGGGGGGGGGGGGGGGGHHH!

So anyway, here’s the deal. We are leaving for NY on Wednesday morning. We are arriving in White Plains and we get to meet our friends at Corporate Angel YAY! (I’ll post photos) After that meeting we are headed to the Ronald to drop off our bags and camp out in clinic for a day of labs and consults blah blah blah…. Then we are off to have dinner with some friends at a really cool restaurant they thought Jake might like and we are looking forward to it SO much it should be LOTS of fun!!!! (I’ll have the camera)
Thursday is a freebie, so I’m guessing here but possibly Toys R US? You betcha! And Friday of course is surgery.

ALL we need is PRAYER! Please keep Jake in your prayers and I’ll update you or HAVE SOMEONE update the website ASAP!

Have a blessed weekend and don't forget to hug your loved ones and tell them how much you love them.....
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

**UPDATE**Thursday, January 30, 2003
Okay the surgery is set for Friday February 7th(That's next Friday) So, it looks like we are headed back up north in a few days. Brian and I have lots of mixed emotions right now, very anxious to get moving FORWARD for once! I'll update when I have more to say. Until then, THANK YOU ALL for PRAYING for Jacob.
-----------------------------------------------------------------------
Still no word yet from NY.

I promise I'll update this page as soon as I get any news.

Jake's fine..still pinging off the walls. I have the creeping crud and want to crawl in a hole.

That's as good as it gets today folks.

**Prayers needed today**
McKenzie who is having complications after her 3rd transplant at Duke.**WARNING THE PHOTOS ARE GRAPHIC**

AND our little buddy Harrison who is recovering from surgery 1/28 in NY.

Stop by their sites and leave a little encouragement in their guestbook.
XO

Tuesday the 28th

**Special prayer requests for our little buddy Harrison he's having another major surgery today. Our thoughts and prayers are centered around Dr. LaQuaglia's expertise and skill in getting the remaining tumor tissues out of Harrison safely. Also, I'd like to ask for everyone to send as many comforting prayers to the Nichols family during this very stressful time.

**Sunday Update**We are HOME!!

HOWDY JAKE FANS! Yep, we are HOME YAY! Thanks to the CAN and the TEAL corporation we arrived safe and sound last nihgt at around 9:30PM. Jake of course slept and I got a little Mommy time. I actually got to read some of the Charlotte Observer and caught up on the 2nd blizzard in NC! How exciting! I'm really glad we dodged the snow, but folks... TRUST ME we DID NOT miss out on ANY COLD WEATHER. It was SO Cold in NY it hurt to breath! Now that's COLD!

When we got home of course Jake was PINGING off the walls because he caught a nap. I however wanted to curl up and CRASH. Brian was SO sweet he had the electric blanket on the bed and I dove into a sea of warmth and comfort. OMG I missed my BED so much. Sleep was good and very much appreciated!

Today we are hanging around catching up on some "snuggle time". It's so good to be home. The PILE of mail on the counter is going to have to WAIT. Today we are going to friends to watch the Super Bowl and yep we are rootin for the BUCCANEERS! GO TB!!

I hope to have some news by next week for you all. I really appreciate all the prayers and encouragement. It means SO much to our family that so many care so much. We will never be able to thank you all enough...there are not enough words.

I have updated the photos page and hope you all prepare yourselves for total CUTENESS! enjoy...

Until next week, have a great Sunday and HUG your loved ones and tell them how much you love them today!

XO

***************************************
Friday, January 24, 2003
Hello Jake FANS!

Well let me first start off by saying THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT THIS WEEK AND ALWAYS! AND HOLY MOLY It’s COLD HERE!!!!! We came prepared for the ARTIC and we are FINE, TOASTY WARM!!

We are "headin SOUTH" on Saturday night. Flying out from JFK this time and ready to have some serious SNUGGLE SANDWICH time with Daddy! Jake's always the cheese. "I wanna be the CHEESE MOMMY!! I WANNA BE THE CHEESE DADDY!!!" No Hug is worth it without the Jakester RIGHT IN THE MIDDLE!!!!

Meeting with Doc Kushner goes as follows:
1. No NEW disease – Praise GOD!! (HALLELUJAH)
2. CT Same as December / Stable
3. Bone Marrow has always been clean and is STILL Clean!
4. No results back on VMA’s or HMA’s…will post when available. To those who don’t know what VMA & HMA is, in brief it measures the level of Neuroblastoma in the urine, and NB is detected through urine.

5. Problem:
There is lymph node uptake in the left shoulder/collar bone area. Here’s the deal. There probably has been uptake in this area since his relapse 02/02. AND it normally would have shown up under a MIBG (Nuclear Medicine) SCAN, but Jake has NEVER shown uptake in any of those areas before with MIBG. The last PET scan he had was over a year or more ago and nothing was mentioned then. My point here is that Jake’s MIBG show negative where this PET showed POSITIVE. In short, no more MIBG scans will be done on Jake, only PET’s they are more sensitive and we can rely on them obviously.

The Plan:
Doc Kushner wants to go over the results from the PET with Doc LaQuaglia. If then at that point Doc LaQuaglia wants to “go ahead” and remove the nodes in question, then surgery will be performed to remove them. If they are removed then most likely Jake will have one more higher dose of chemo at home in-patient in preparation for the antibody treatment in March time frame.

If surgery isn’t decided upon, then Jake will STILL have the higher dose of chemo at home and AFTER he recovers from that then he will come back up in preparation for the antibody treatments.

I hope everyone understands this, cause I’m still kinda reeling from today. I’m not really surprised there’s node involvement…I’ve suspected it all along. It’s very characteristic for NB. All of us are very happy with all the results. The Doc’s just BEAMING from ear to ear! Brian and I are pleased Jake is STABLE at this point in his journey. He’s come A VERY LONG WAY, and we are both blessed to have him with us still today. I appreciate all the prayers and encouragement along the way and I’ll update again as soon as I know the PLAN for sure.

PS
We had a blast last night thanks to Harrison, Gina, Grama Rose & Grampa John. I’ll post photos when Jake and I get home and get settled. Man, I can’t wait to share the CUTENESS WITH YOU ALL, these boys are OUR HEROS and we are SO lucky to have them in our lives.

Until we get home,
XO

Thursday night update...
Hello Again…

Yesterday was GREAT! TOYS R US WAS AWESOME AND THE BOYS HAD A BLAST! Yes Jake is and WAS a MANIAC and YEP still TERRIFIED OF THAT DARN DINOSOUR!!!!!!

Quick update, well today was HELL for about an hour! Repeat from December's pass out episode in clinic. NEVER AGAIN WILL JAKE HAVE TO BE STARVED AGAIN! Long story but the PET scan was done without anesthesia and I’m glad it’s over!! (And so is JAKE!) I mean DUH that was a dumb thing to say huh?

Anyway, Harrison and his Mom Gina came and RESCUED US tonight and we are in HOBOKEN, NJ “chillin” and just keeping our minds clear right now. YAY!!

Tomorrow we have a meeting with Doc Kushner and HOPEFULLY I will know how stable Jake’s disease is?? I’m nervous and could not sleep last night very well. Brian and I are both very anxious for RESULTS! And of course CLINIC DOESN’T KNOW ANYTHING YET!!!

We are headed home Saturday night and I’ll update when I get the chance on what’s next….

Thanks again for ALL the prayers for JAKE!

PS..
Apparently I don't get slack for being SOUTHRERN! BLAH.. BLAH.. BLAH.. "DOBROWSKI" TRYING TO BUST MY CHOPS!!! HA..HA Love ya...I'll get ya back!NJ IS TOO COOL!!! I'll Take you up on borrowing your relatives anytime!!!!! :O)

Tuesday January 21st
Hello Jake Fans!

Just a quick note to let you all know we arrived SAFE & SOUND! Bumpy landing at Teeterboro, kind of turned me green...UGH!!!

Yesterday was a WHIRLWIND OF EXCITEMENT!! We got settled in to the Ronald House and received a visit from our FAVORITE NJ FAMILY IN THE WHOLE WORLD THE CARBONE'S!! Thank you guys, we love you very much and DON'T KNOW WHAT WE'D DO WITH OUT YOU ALL!!!!!Aunite Susan hooked me up with the essentials and all the stuff to make SWEET TEA ! YAY!! Jake's in HOG HEAVEN!! :O)

THEN...The Carbone's drove us to Harrison's house for dinner & play. I mean...how much more fun can you ask for? The boys were pinging off the walls, the dinner was EXCELLENT THANKS TO GRAMA ROSE & GINA!! You guys are the best and we love y'all too!!!

Tuesday's Bone Marrow aspiration went well. We did not have to wait all day, they took him right in this morning and he had all 4 sides biopsied. OUCHIE!!! He's a little STIFF, but hopefully with Tylenol he'll be comforted.

Tonigt we are chillin here at the RMH, we need a little down time since Jake's hurting. BUT TOMORROW AFTER THE CT SCAN WE ARE HITTIN TOYS R US!!!! YEAH BABY!!!! Jake deserves it and since Harrison's surgery was cancelled...maybe we can hook up with them and make a day of it?? That's all for now and I'll update after I know what the deal is with Jake's CT results.

Thank you for all the prayers going up for Jake. We need them! PRAY PRAY PRAY NO NEW DISEASE PLEASE!!!!!

Thank you all & God bless.
P.S.....
We miss you Daddy!

**Wednesday, January 15, 2003

HELLO HELLO HELLLLLLLLLLLLLLOOOOOOOOOO JAKE FANS!!!!

Let me first start off by saying that NO NO NO NO NO NO NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO I am NOT pregnant! You see it’s just that my 4 year old has this fixation on becoming a big brother. He’s wearing me OUT with it! At the library he made me check out a book called ”Hello Baby”. This book explains ALL about becoming a big brother/sister etc…Man this kid is a peice of WORK I tell ya! The other day he was REALLY making another big deal out of the whole thing and I said “Jake honey, can’t we just get a kitten instead”??? And he said “ Sure Mommy, that would be great!” WHEWWEEE ~Sounds like a DEAL TO ME! ~

Jake saw Doc McMahon today, and all looks good. Jake’s ANC is 920. His White’s are 2.3, HGB is 11.1 & Platelets are 132K. Not too SHABBY! Anyway, I’m sure next week the platelets will take a beating, they always do!

We have a flight out of Charlotte on Monday thanks to Corporate Angel and their friends with Wachovia/First Union. Vickie with Corporate Angel called me to verify it this morning and said the crew is excited about seeing Jake again. I thought…Hmmmm these folks must really like being worked over by an overly charming little SKUNK! They are FANTASTIC and I’m sure all will be fine if I can just keep Jake under control. I tell ya, these days he comes out with SOME REAL DOOOOOOOOOOOOOOOOOOOOSSSIIIIIIIIIIIIIIIIIIIEEEEEEEEEEEEEEE”S

**PLEASE PLEASE HELP US PRAY FOR NO NEW DISEASE TO BE FOUND ON WEDNESDAY & THURSDAY**Jake’s due for a CT scan on the 22nd and a PET scan on the 23rd. The PET scan is A LOT more involved and actually shows dead versus live tissue. The Bone marrow aspirations are up in the air because they scheduled them on Monday and HA we won’t be there until Monday afternoon. SO who knows what will happen????

Anyway…I’ll update you all on what’s HAPPENING with everything as soon as I can. As ALWAYS, thank you for stopping by to check in on Jake, saying those prayers for the little man AND taking the time to sign the guest book, it doesn't matter what you say...WE love reading them together with Jake and it makes our day much BRIGHTER! We appreciate it very much.

XO

**RANTING/RAVING session here**
OMG! Did anyone else hear about the CRAZO in OHIO that pretended that her little girl had cancer? Well go to this link "A FAKED CANCER" and read about it. I'm just stunned. Brian woke me up this morning foaming at the mouth MAD! We are just so amazed at how many freaking crazy people there are in this world that hurt innocent children. This witch has got to have some form of MbP, I'm guessing. Maybe she should be punished by having to come and sit and watch what a chemo treatment OR radiation treatment does to a chid EVERY DAY FOR THE REST OF HER LIFE!!!!!. Or better yet, leave her in a room with all the parents/loved ones who are FIGHTING TO KEEP THEIR CHILD ALIVE or HAVE LOST a CHILD!!!I'd love 10 seconds with this woman!

And what about her child? I just cannot imagine the confusion she's caused her child. Brian and I are just SICKENED by this.

Tuesday the 14th... News & NEW PHOTOS!!
NEW PHOTOS OF THE COURTNEY CLAN ON THE PHOTO PAGE!!!

Hello All!

Well today Jake and I went to the library here in town. We joined in on "story time" this week and really seemed to like it alot. I crave this SO BAD for Jake to have a "normal" childhood. He came RUNNING out and jumped in my arms and said "Mommy Mommy!! We read a book about SNOW! and watched a movie!! It was SO MUCH FUN!!" I asked him if he'd like to go back soon and he said "Of course Mommy!"

Here's a really good Jake moment for YOU ALL TO CHUCKLE ABOUT! Yesterday afternoon I was reading a few books to Jake. He stopped me in the middle of my reading and said "Mommy...do you have a baby in your belly yet?" Hmmmmm...I said "Uh No honey".... He said "ARE YOU SURE THERE'S NOT A BABY IN YOUR BELLY?" and proceeded to push on my rib cage. "I feel it I FEEL IT MOMMY"! "No Jacob...that's Mommy's rib cage." Thus opening up another CAN OF WORMS..."Mommy...what's a rib cage?".............................Calgon take me away...................................

Sunday, January 12, 2003 at 01:31 PM
Hello Jake Fans!

Well Jake had a pretty good week last week. The 3rd round of oral chemo is under his belt finally. This round was alot different on him. His energy level went kaput and his appetite went down hill, even with the oral appetite stimulant. A few days were pretty last week and I decided to take him to the park **SEE PHOTOS** Anyway, we didn't stay long, all week he was really tired and slept alot. He's not really interested in eating either I'm worried he's going to start loosing weight. UGH! He's just NOW getting SOME of his "little fat rolls" back after two years of this CRAP!

We had special visit from my sister Jamie and my nephew Brody from Charleston, SC.**SEE PHOTOS** We miss them terribly!! Thanks Aunt Jamie & Brody for coming to visit!! We love you guys!! As you can see they had alot of fun together.

Jake's due to see Doc McMahon on Wednesday of next week for labs. I'll post another update then and hopefully I'll have our plans for NY by then? Until then, thanks for stopping by and checking in ..... We appreciate all the prayers going up for the Jakester!

XO

Please help me pray for the Disney Family. Shawn lost his battle yesterday.

Tuesday the 7th
**UPDATE**
Yesterday's clinic visit was great! We enjoyed seeing our little buddies Spencer & Miranda!!

Jake's ANC was over 1200! This is good. He started his 3rd round of oral chemo here this morning. Takes the pills like a champ! No problems....

I'm thinking we will be in NY for tests the week of the 20th? Nothing set in stone yet. I will advise you all when I know for sure.

Until I have more news....Thanks for stopping by and checking in on Jake!

**Sunday, January 05, 2003**
Hello Jake FANS!

H O L Y .... M O L Y !!!! WWWWWWWWWWWWWWWWWWWWHHHHHHHHHHHHHHHHEEEEEWWWWWWWWWWW Brian and I are SO GLAD Christmas week and Birthday week are done! Jake had an ABSOLUTE BLAST for those two weeks! He got EVERYTHING HE WANTED AND MOOOOOOOOOOORE!

Jake fought me the ENTIRE time while I was taking the Christmas decs down. "NO MOMMY DON'T !!!!!!!! LEAVE THEM UP!!!!!!!!!" I was head-butted in the hips and legs for most of the morning, so if I have a limp you'll all know why. I was thinking that instead of the padded room and straight jacket, someone could refer me to one of those sumo-wrestling places. You know where you get all gussied up in that HUGE PADDED GET UP and BOUNCE off each other. I think that would be much more beneficial. Dont' you?

Both parties were great and if you weren't invited, it wasn't because we didn't want you to be here, it was that we only have a limited amount of room here at the house. TRUST ME WE WERE STEPPING ALL OVER EACH OTHER!!! Brian and I would have had to rent out the town hall to invite everyone....We hope you understand....

Jacob was so happy to see his friends Kenna, Ryan, Seth and Harrison. It was a real treat seeing everyone. THANK YOU ALL FOR COMING AND SHARING LOTS OF JOY WITH US! I believe Jake is WORE SLAP OUT! I know Daddy's tired of putting things together, everytime he'd get something done Jake would hand him another to asemble UGHHH!

Jake's due to see Doc McMahon in the AM. I'll post the details when we get back. I'm hoping his ANC will be high enought o start the chemo tomorrow. If so, I'll be calling MSKCC to schedule the next round of tests to see what the next step is. Jake's eating and pretty much still pinging off the walls.

As always, thank you ALL for stopping by and saying those prayers for the JAKESTER! Stay tuned.....
XO

Special prayers for our little buddy Harrison he's heading back up to NY next week and scheduled for more surgery soon. We love you guys and are ALWAYS praying for Harrison. XOXOX

**Don't forget to check out the photos from Saturday**

Monday, December 30, 2002
**NEW BIRTHDAY PICTURES**

Hello Jake FANS!

Well Jake's still TRUCKIN RIGHT ALONG. Christmas flew by now it's BIRTHDAY TIME!!!! Jake will be 4 on the 2nd. He's so excited about having some of his friends over for a party. We are having a small celebration on Thursday and then another on Saturday. It should be fun....I'll post photos.

Jake saw Doc McMahon today all is great and his ANC looks good. Rolling right along! He starts another round of chemo on Tuesday the 7th if his counts don't take too much of a huge dive between now and then. I'm praying to GOD everyday that this stuff keeps the cancer from growing back. We've GOT to move forward! I can't believe he's doing as well as he is, he's so full of energy and eating gainig weight and yes STILL TOTALLY HARD HEADED!!!! Brian and I wouldn't have him any other way.

Doc Kushner called Christmas Eveto advise that the VMA (urinary marker tests) Look great. He seems very pleased and when I got off the phone with him I started crying. I held it together until he said "This will be a great Christmas won't it"? Yep, he was right and I hope the same goes for the rest of the year...still taking things one day at a time.

Jake enjoyed his Mimi and Uncle Josh's visit very much. We hated to see them go. It's so nice having family around. I hope you all have a wonderful new year. I'll update after Jake's birthday parties.

Thank you all for stopping by to check in and SAYING THOSE PRAYERS FOR THE JAKESTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HAPPY NEW YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
XO

Friday, December 27, 2002 at 08:27 AM (CST)
Hello Hello Hello!!!

Well Christmas was great! I was so excited about seeing the look on his face Christmas morning, I WOKE UP AT 5AM and was chomping at the bit for Jake to get up!!! UUGGGGGGHHHHHH.. Well as fate has it, Jake decied to sleep until almost 8AM, so I was dozing off when he got up, YEP, I kind of felt a LITTLE PUNCH DRUNK! That's okay, cause his face made up for it all. Jake RACKED UP in the toy dept. He has been pinging off the walls ever since. He's still full of energy and even woke up his Daddy this morning at 4:30AM to watch cartoons.UUUUGGGGGHHHHHH Yep, it's never ending excitement here at the Courtney Casa..................................

Jake's REALLY enjoying the company of Mimi & Uncle Josh very much. He's a big help in the kitchen this morning helping Mimi prepare beakfast. Eveything is "no I can do it!!!!!" He's eating and still full of lots and lots of energy.

We are getting ready for the big Birthday Party next weekend. I can't believe Jake's turning 4! It's amazing how fast they grow up. I hope everyone has a SAFE and wonderful New Year. **Check out the Christmas morning pictures**

XO

Monday, December 23, 2002
HO HO HO Everyone!!!!!!!!!!!!

Well, based on the emails and guest book entries we’ve received, I’m sure glad my journal entries provide you ALL with MUCH COMIC RELIEF!! YEAH YEAH LAUGH IT UP. Just kidding, Jake is of course keeping us…not just on our toes but TIPPY TOES! Yep, he’s a mess all right.

Well, he finished his 2nd round of oral chemo. He’s trucking right along. Adrienne from Home Health came out this morning for labs and before she was allowed to take blood, she had to DUEL with Jake! **See Photos** Yep, he’s got them all fighting to get to him! That’s the way it ought to be right?

Jake’s labs came back fine. His ANC is around 1200. This is good news, and we are very grateful he’ll be in good spirits and feeling good for Christmas. He’s so excited that Christmas is just a few days away, and keeps having me remind him “HOW MANY DAYS LEFT TILL CHRISTMAS MOMMA?????????????????????” Jake says he’s decided he wants Santa to come in through the front door, instead of the fireplace. When I asked why, the response I got was “Moma…if he comes through the fire place it will be too HOT and it will burn HIS BUTT!” UUUUUUUGGGGGGGGHHHHHHHHHH! So have a little more comic relief for the week! :O)

I’m thinking Brian got me a straight jacket and some padding for our spare room?

Well, that’s all the fun for now. We want to thank our families, in Oklahoma, Colorado, Hawaii, Georgia, South Carolina and California. Even though we all are so spread out, we have always felt like you were right here with us. We miss you all terribly and wish we weren’t SO FAR APART! We are so lucky to have such great support through you guys. We hope you all have a wonderful Christmas.

Thank you to all our friends who have continued to send loving encouragement, prayers and strength our way. I hope every one has the most wonderful Christmas. “Friends are angels who guide you through life”.

XO

Thursday, December 19, 2002
Oh you'd better watch out..
You'd better not cry...
You'd better not POUT!..
I'm telling you why!!
Santa Clause is coming to town!!...

Yeah RIGHT! So much for THAT THEORY!Well let's see...Jake cried and carried ON and ON about some dumb little balloons at the grocery store yesterday. Then he pouted and threw the BIGGEST fit over it. I just kept on walking and singing that song.. Eventually he got the point. Not to mention everyone in the store got the biggest KICK out of the WHOLE scene. UGGGHHH! I know I've mentioned straight jackets before, but I'm seriously considering padding a room in this house and locking myself in it! To add to my insanity, Jake told some little old man he was ugly yesterday at the post office. I could have just DIED! I keep thinking of that commercial for bubble bath "CALGON TAKE ME AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Everything is going good. Jake's taking his oral chemo like a champ, and eating lots of chips and DIP. I think he's burnt out on the whole ham sandwich thing. I would be too after eating them 3 and 4 times a day. YUK!

Jake's REALLY getting excited about CHRISTMAS. He even decided to open a gift under the tree! Yep, the little skunk got into the gifts already. He unwrapped a gift his Grama Cindy sent and brought it in to me and said "Look Moma, I got a present!". I told him it was not Christmas quite yet, and we wrapped it back up and put it back under the tree. The anticipation is really wearing on him. He's a mess!Daddy and I decided not to exchange gifts this year, we both figured we have already received the greatest gift of all...

My digital camera started working again the other day. THAT WAS A PLUS! So, now I can post Christmas pictures MUCH EASIER YAY!

Well, that's all for now, Thanks for stopping by and checking on Jake. Until next time....

XO

Please continue to keep little Harrison Nichols in your prayers. He is very sick with an infection. I spoke with his Mom Gina again yesterday, she feels like they've stopped the infection from progressing any further. Harrison's Dad and Grampa John are getting temporary lines put in and are having white cells pheresed to give to Harrison hopefully today. Please help me lift them all up in prayer. GROW CELLS GROW HARRISON!! XOXOX

Tuesday December 17th
Hello Jake FANS!

Well Jake is DOING GREAT!

wwwwwwwwwww;;;;;;[[[[[[[[[ppopopopoppopppoppoppopoppppoppppopoppopopopopopyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy...(That was a message from the little MONSTER!)

Jake saw Doc McMahon yesterday in clinic. All the labs came back LOW. Jake's ANC was 675 (Panic mode for Momma is 1000) YYYYYYYYIIIIKES!!!!!!!! Anyway, Jake's due to start his chemo today, all will be fine, one day at a time...

Jake's so glad to be home! He's pinging off all the walls, stripping his pants and streaking around the house alot. He likes to be naked apparently. He thinks it's SO funny. It seems like in the past two weeks he's also learned to talk NON-STOP ALL DAY LONG. I'm assuming this is total 4 year old behavior. Brian and I just look at each other cross-eyed alot latley! He really cracks us up.

As for Christmas, we are spending it here at home. I think my little brother is coming up from Atlanta for a visit next week, and my Mom and Grandmother are coming the weekend after Christmas. I'm just SO glad to be HOME FOR CHRISTMAS!

That's all I have for now, I'll update again soon. Thanks for stopping by and checking in on Jake and for saying THOSE PRAYERS!
XO

***Special prayers for our little buddy Harrison Nichols He's in the hospital for a life threatening infection in NY. I spoke with Gina (his Mom) this morning and she requested prayers for Harrison. Please help me pray for Harrison's white blood cells to start growing and to bounce back and get home for Christmas here in NC! We love you guys

Tuesday, December 17, 2002
Hello Jake FANS!

Well Jake is DOING GREAT!

wwwwwwwwwww;;;;;;[[[[[[[[[ppopopopoppopppoppoppopoppppoppppopoppopopopopopyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy...(That was a message from the little MONSTER!)

Jake saw Doc McMahon yesterday in clinic. All the labs came back LOW. Jake's ANC was 675 (Panic mode for Momma is 1000)YYYYYYYYIIIIKES!!!!!!!! Anyway, Jake's due to start his chemo today, all will be fine, one day at a time...

Jake's so glad to be home! He's pinging off all the walls, stripping his pants and streaking around the house alot. He likes to be naked apparently. He thinks it's SO funny. It seems like in the past two weeks he's also learned to talk NON-STOP ALL DAY LONG. I'm assuming this is total 4 year old behavior. Brian and I just look at each other cross-eyed alot latley! He really cracks us up.

As for Christmas, we are spending it here at home. I think my little brother is coming up from Atlanta for a visit next week, and my Mom and Grandmother are coming the weekend after Christmas. I'm just SO glad to be HOME FOR CHRISTMAS!

That's all I have for now, I'll update again soon. Thanks for stopping by and checking in on Jake and for saying THOSE PRAYERS!
XO

***Special prayers for our little buddy Harrison Nichols He's in the hospital for a life threatening infection in NY. I spoke with Gina (his Mom) this morning and she requested prayers for Harrison. Please help me pray for Harrison's white blood cells to start growing and to bounce back and get home for Christmas here in NC! We love you guys

Tuesday, December 17, 2002
Hello Jake FANS!

Well Jake is DOING GREAT!

wwwwwwwwwww;;;;;;[[[[[[[[[ppopopopoppopppoppoppopoppppoppppopoppopopopopopyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy...(That was a message from the little MONSTER!)

Jake saw Doc McMahon yesterday in clinic. All the labs came back LOW. Jake's ANC was 675 (Panic mode for Momma is 1000)YYYYYYYYIIIIKES!!!!!!!! Anyway, Jake's due to start his chemo today, all will be fine, one day at a time...

Jake's so glad to be home! He's pinging off all the walls, stripping his pants and streaking around the house alot. He likes to be naked apparently. He thinks it's SO funny. It seems like in the past two weeks he's also learned to talk NON-STOP ALL DAY LONG. I'm assuming this is total 4 year old behavior. Brian and I just look at each other cross-eyed alot latley! He really cracks us up.

As for Christmas, we are spending it here at home. I think my little brother is coming up from Atlanta for a visit next week, and my Mom and Grandmother are coming the weekend after Christmas. I'm just SO glad to be HOME FOR CHRISTMAS!

That's all I have for now, I'll update again soon. Thanks for stopping by and checking in on Jake and for saying THOSE PRAYERS!
XO

***Special prayers for our little buddy Harrison Nichols He's still in the hospital for a very serious infection in NY. I spoke with Gina (his Mom) this morning and she requested prayers for Harrison. Please help me pray for Harrison's white blood cells to start growing and to bounce back and get home for Christmas here in NC! We love you guys!!

Friday, December 13, 2002

Were BACK! YAY!!!

Thanks to Corporate Angel and Bank of America we are HOME HOME HOME!!!! The crew was incredible, and Lisa the flight attendant spoiled Jake BEYOND REPAIR (Yeah right, Brian and I ruined him long ago). Jake was set up with a headset and the movie "A Bug's Life", popcorn and the VIP treatment. Before I knew it, those legs were crossed and he was relaxin like a little prince. Thanks BOA!!!YOU GUYS ARE GREAT!!!!!!!

Well the scans revealed nothing NEW! YAY! NO NEW TUMORS, Jake has small areas of scar tissue in his chest, but nothing new to be concerned with right now.

Funny story:
While in the waiting room...waiting for Jake's CT scan. One of the nurse's asked Jake what he wanted to be when he grew up. I swear as serious as he could get...he looked right up at her and said " I'm going to be a BIG BROTHER"!! I liked to have fell right out of the chair. He said "I pray to God that I get a little Brother" There must have been about 10 people sitting there and they were all bent over with laughter. I thought, Oh GOD...please don't answer that little one's prayers right now...

We are home for at least 6 weeks before having to be back in NY. Jake's due to start his oral chemo again on Monday. Doc McMahon wants to see him first thing. Here's the plan; Doc Kushner wants Jake to do two (5) day high dose rounds of the oral chemo here at home. So basically Jake will be on this chemo once every three weeks. Then he wants him back up in NY at the end of January for repeat scans (CT & PET)and labs. From there they will decide whether to enroll Jake in a new protocol that is opening up or do ONE MORE high dose of chemo (AT HOME)in preperation for the 3F8 Antibodies. We won't know for sure until the end of January what's going on. That's okay, cause right now I like taking it one day at a TIME.

Well Doc Kushner was SO HAPPY, I mean the man was BEAMING ear to ear over how good Jake looked. He stated that he was so pleased and he couldn't believe that with everything Jake has been through he looked so good. I think that if this oral chemo can keep anything new from growing, his chances will be very good. I'm always hoping and praying for the best. I thank GOD every night for giving me that day with Jake.

We are SO glad to be home, Daddy & Jake are in his room playing video games, I'm just absorbing the moment right now. Listening to them play is the sweetest music to my ears. We are home, we are together....finally!

Hoping your weekend is great! Thanks for stopping by and saying a prayer for my little one. I appreciate it very much.

**
Special prayers for our friend Harrison. He's still in the hosptial. I spoke with Gina this morning, she says that Harrison does NOT have a fever, but the line infection is keeping them in the hospital. Harrison is getting slammed with Vanc, so hopefully that will nip it in the bud. Please help me lift the all up in prayer. Gina & Mike need strength right now. Hang in there guys, we love you and are all thinking about you!
**

Thursday, December 12, 2002
Hello Again Jake Fans!

UUUUUUUUUGGGGGGHHHHHHHH!!!!!Well today was pure hell. Sorry but that's what it felt like. Jake was not allowed any food after 7AM, and no drink after 11AM. He was so mad at me all day, and the crying and the begging was enough to make me pull all my hair out. Jacob's blood sugar dropped and he passed out. When it was checked it was at 47 (normal is around 75). He had to have (d5w with vitamin K)fluid to get it all straight. To say THE LEAST I WAS FOAMING AT THE MOUTH MAD! Never again will this happen to my child. All little children should have their scans done very early to not have to suffer without food ALL DAY. THEY DON'T UNDERSTAND! I threw the biggest Courtney fit ever this time! I'm sure they all see me coming and want to run.. Oh well, I'm not one to hold BACK ESPECIALLY WHERE JAKE IS CONCERNED!

Well, after Jake was better his MIBG scan was started at about 3PM. He finished it around 5PM or so. I meet with Doc Kushner in the morning and then we are headed home. YAY!

I'll update with what's next when we get settled. I want to thank you all for stopping by and saying those AWESOME prayers for Jake and Mommy & Daddy. We appreciate it very much.

PS
Jake's counts are coming back around. his white's are at 2.9 and HGB is at 11 and Platelets are at 98,000. Not too shabby. Jake's chomping at the bit to get home to Daddy ASAP.

XO

Wednesday, December 11, 2002
Hello Again!

Well today's CT scan went REALLY well! Jake is SUCH A BIG BOY! He didn't have sedation and was very still during the entire scan. I'm so proud of him.

Tomorrow is the MIBG (nuclear medicine) scan. He will be sedated for that because it takes about an hour and a 1/2. I'm hoping and praying that all goes well tomorrow.

Jake's counts DROPPED a bit. His ANC is sitting at 1000. His counts are 1/2 what they were last Wednesday. That's a bummer, that oral chemo has really streched itself out. We meet with Doc Kushner on Friday morning. I'll know the next step then and will update as soon as I can. I'm kind of freaked out with the whole transit strike possibility here. I'm HOPING we are outta here on Friday!! I swear it seems like there are five times the amount of people here compared to last month. UUUUUUUUUGGGGGGGGHHHHHHHHHHHHH!!!

Last night the NY Giants hosted a dinner for us here at the RMH. That was pretty cool. I met Kerry Collins, it's funny...I had no idea he wasn't with New Orleans anymore. What a dope huh? Anyway, he's pretty TALL. Per my friend Sharon here in NY she saw Jake on TV here last night. The reporter asked him what he wanted for Christmas and he said "TRANSFORMERS". No kidding! (Thanks for telling me about Jake Sharon)

Please keep Jake in your prayers tomorrow. We are furiously praying for no more NB to be anywhere!!!!!!

Thank you all for stopping by and checking in on Jake. We appreciate all your support and prayers very much!

**
Special prayers for Harrison who has a line infection and possibly getting a temporary catheter placed soon. Also, our friend Autumn who has been in the hospital for a few weeks figthing an infection too. We love you guys!

Untill next time...
XO

Tuesday, December 10, 2002
Hellllllllllllllooooooooooo Jake Fans!

Well, the flight WAS FANTASTIC! Thanks to Duke Energy! We left Charlotte at 9AM, got to Boston and the pilots took Jake & I to lunch at a seafood resturant. It was great! Jake however decided to turn into this monster and was in a very bad mood ALL DAY! We got to NY at about 3PM. I believe Jake is getting tired of leving Daddy and the whole "not being together thing" in general. I'm kind of over it myself. We've had several talks since we've been here. Without further detail the day was pretty crappy. We miss you Daddy XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX.

We got to NY and the Ronald house was booked full, no room for us BUT.. They put us up at the Helmsley Hotel for one night, that place is REALLY NICE. We are safe and sound back at the RMH tonight. My friend Tori is here and some other people I've met along the way. It's nice, I like seing familiar faces.

Jake's due for a CT scan at 8:30AM **Please help me pray that there is NO tumor anywhere. We are praying our hearts out we can MOVE forward on his treatment for once. Jake's also scheduled for an MIBG scan on Thursday at 2PM. In between all of this we are going to try and hook up with our friends Gina and Harrison tomorrow. Hopefully we can have a little fun..

THANK YOU THANK YOU THANK YOU for stopping by and saying those prayers for Jake, we appreciate it very much!!!

********************
Special prayers for:
Harrison to bounce back after this chemo and get HOME BEFORE CHRISTMAS!

P.S.
I thought it was cold in NC...HA, we are snow cones here!BBBBBBBBBBBBBBBBBBBBBRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!

Saturday, December 07, 2002
BBBBBBBBBBBRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!

Let it thaw...let it thaw....LET IT THAW!!!!

Hello Jake Fans!

We are surviving the winter BLAST of 2002! Thanks to gas-generated power. Jake and I ventured out Friday morning for food & gas. It looks like a hurricane or tornado came through here. I could not get over all the downed power lines and trees. The ice is thawing now off all the trees, so we've been dodging ice daggers all day. The roof has been PELTED by them all morning, sounds like the house is falling apart.

Just wanted to let everyone know we are fine! Thanks for all the thoughts and prayers for Jake. We are SO THANKFUL TO ALL OF YOU CHECKING IN ON US..AND we are SO Thankful we have wonderful neighbors who had power when we didn't, that took care of us and fed us etc...

**NY News-
Jake and I are flying up on Monday for NY, thanks to Corporate Angel and Duke Energy. We have a lay-over in Boston for a few hours, and will arrive in NJ around 4PM. I was so glad to get a flight out, I didn't think we would with that other storm coming on Tuesday. I'll update when we get there and get settled.

SPECIAL THANKS TO ALL THE POWER CREWS FROM IN AND OUT OF STATE REPAIRING THE STATES OF NC & SC'S POWER!!!

Signing off now to save power. Stay WARM AND SNUGGLE WITH YOUR LOVED ONES!!!!!!!
XO

Wednesday 12/4/2002 **UPDATE & NEW PHOTOS**

Let it snow...let it snow...let it snow!!!

Well, old man winter showed his ugly mug today! The roads this morning weren't bad only sleet blowing around. We got to clinic early, it WAS FREEZING OUTSIDE! I knew that couldn't be good...

Jake's labs are great. His ANC is still about 2200. Not too shabby! Doc wants to check his labs again before we head up next week. Still don't know when we are leaving. Won't know until later this week or early next. Will keep ya posted.

When we finally got to the car it was about 12PM, Daddy called and said the HWY was backed WAY up, take the back road he said. Well, all the crazy people joined us on the back roads, cause I could NOT BELIEVE how DUMB some people are. I guess most of them were not expecting the roads to FREEZE! I'll hold my tounge on that.

It took us over an hour to get home. I passed two really bad wrecks. Jake was snoozin, SO...I just took my time and made it home SAFE! WHHEEEWW!

Once home we bundled up and went outside to play in the snow falling. I couldn't get over how BIG the flakes were. Jake was in awe, I was so happy to see that look of amazement on his face. He tried to catch a flake or two on his tounge, but chickened out. It's okay, we had alot of fun. Until next time.... Thanks for checking in on Jake!!

Monday, December 02, 2002
Hello Jake Fans!

Well last weeks clinic visit went just fine, everyone was so happy to see Jake and of course he was happy to everyone too! Jake’s ANC was in the 2500 range, so he was looking pretty good after taking the oral chemo at home. Jake has continued to eat, play and BOUNCE off all the walls everywhere we go. That chemo hasn’t seemed to stop him one bit. We are enjoying being at home together as a family SO MUCH!

Weekend before last, we took Jake to see Santa. Well…wouldn’t you know he ran right up to Santa, jumped in his lap and started with the list of things he wanted. He was SO cute counting on his fingers one by one the toys he wanted. After he was done, he hugged Santa and said, Thanks Santa! I’ll have to scan the photo later. I dropped my digital camera a week or so ago, it’s like I’m photographically challenged now. I don’t know what to do without my camera! UGGHHH!

We had a terrific Thanksgiving dinner right here in NC with wonderful friends. Jake of course ate a ham sandwich. I bet he eats 3 or 4 a day now. He’s off the appetite stimulant and has NOT STOPPED EATING YAY!! I’m anxious to see how much weight he’s gained this week.

The past weekend we headed south for a long overdue visit with my family. I hadn’t seen my Grandmother (Granny Lu) in over a year. We were really glad to see everyone including Mimi, Aunt Lisa, Auntie Stacey & cousin Justin. It was really great seeing them all. We miss you guys bunches! XOXOXOX

Jake sees Doc McMahon Wednesday for labs etc.. Then it’s off to NY next week for scans and test and labs etc.. Please keep Jake in your prayers on December 11th & 12th.

Thank you all for stopping by to check in and saying a prayer for Jake!
XO

**PS**
Special CONGRATULATIONS are in order for "TOT" & Rebekah! "Tot" A.K.A "The Wishmaker" asked Nurse Rebekah to be his bride last Wednesday!!! Congratulations guys!! We love y'all!!

Monday November 25th
**Another mini update**

Brian, Jake & I attended the Athletes4children Turkey Bowl 2002 in honor of McKenzie yesterday. Jake was the honorary captain for the first of the four games and got to do the coin toss. Atheletes4children works closely with Godstock to distribute financial help to local families like ours that have children with life threatening illnesses. **See NEW Photos**

Friday, November 22, 2002
**Mini Update**

Athletes4children is having an event to raise money for one of our Rainbow families this weekend. Please check it out
McKenzie

Hello Jake Fans!

Well the pill taking (oral chemo) is going very well. EXCEPT it is VERY CONSTIPATING! Man talk about from one extreme to the OTHER! Poor Jake, he just keeps taking everything in stride.

His appetite is still veracious. He ate Tostitos for breakfast this morning. YUK! Now he wants ranch dressing with cheese hotdogs? YUK YUK YUK! Whatever makes him happy and keeps him EATING I don't really care! Jake sees Doc McMahon next Wednesday for labs. I'm hoping this chemo doesn't hammer his counts. Please pray that this cycle is easier on his little body.

This morning we've started decorating for Christmas. Jake couldn't get over all of Mommy's cool stuff. And thanks to Grama Cindy, we now have quite a snowman ornament collection. YAY! Mimi is really good about Christmas decorations too, she bought him a Santa cookie plate and he's begging me to make Santa cookies already!

Jake helped me put our little tree together and hang all the ornaments he could reach on the tree. He's a great little helper.

Jake's due back in NY for tests on the 11th & 12th of December. I'll find out on the 12th how long we are going to have to stay and what the next step in Jake's treatment will be. Thank you for stopping by and checking in on Jake.

This Thanksgiving we have everything to be thankful for. We hope you all have Happy Thanksgiving, I know we are.

XO

Monday November 25th
**Another mini update**

Brian, Jake & I attended the Athletes4children Turkey Bowl 2002 in honor of McKenzie yesterday. Jake was the honorary captain for the first of the four games and got to do the coin toss. Atheletes4children works closely with Godstock to distribute financial help to local families like ours that have children with life threatening illnesses. **See NEW Photos**

Friday, November 22, 2002
**Mini Update**

Athletes4children is having an event to raise money for one of our Rainbow families this weekend. Please check it out
McKenzie

Hello Jake Fans!

Well the pill taking (oral chemo) is going very well. EXCEPT it is VERY CONSTIPATING! Man talk about from one extreme to the OTHER! Poor Jake, he just keeps taking everything in stride.

His appetite is still veracious. He ate Tostitos for breakfast this morning. YUK! Now he wants ranch dressing with cheese hotdogs? YUK YUK YUK! Whatever makes him happy and keeps him EATING I don't really care! Jake sees Doc McMahon next Wednesday for labs. I'm hoping this chemo doesn't hammer his counts. Please pray that this cycle is easier on his little body.

This morning we've started decorating for Christmas. Jake couldn't get over all of Mommy's cool stuff. And thanks to Grama Cindy, we now have quite a snowman ornament collection. YAY! Mimi is really good about Christmas decorations too, she bought him a Santa cookie plate and he's begging me to make Santa cookies already!

Jake helped me put our little tree together and hang all the ornaments he could reach on the tree. He's a great little helper.

Jake's due back in NY for tests on the 11th & 12th of December. I'll find out on the 12th how long we are going to have to stay and what the next step in Jake's treatment will be. Thank you for stopping by and checking in on Jake.

This Thanksgiving we have everything to be thankful for. We hope you all have Happy Thanksgiving, I know we are.

XO

Monday November 25th
**Another mini update**

Brian, Jake & I attended the Athletes4children Turkey Bowl 2002 in honor of McKenzie yesterday. Jake was the honorary captain for the first of the four games and got to do the coin toss. Atheletes4children works closely with Godstock to distribute financial help to local families like ours that have children with life threatening illnesses. **See NEW Photos**

Friday, November 22, 2002
**Mini Update**

Athletes4children is having an event to raise money for one of our Rainbow families this weekend. Please check it out
McKenzie

Hello Jake Fans!

Well the pill taking (oral chemo) is going very well. EXCEPT it is VERY CONSTIPATING! Man talk about from one extreme to the OTHER! Poor Jake, he just keeps taking everything in stride.

His appetite is still veracious. He ate Tostitos for breakfast this morning. YUK! Now he wants ranch dressing with cheese hotdogs? YUK YUK YUK! Whatever makes him happy and keeps him EATING I don't really care! Jake sees Doc McMahon next Wednesday for labs. I'm hoping this chemo doesn't hammer his counts. Please pray that this cycle is easier on his little body.

This morning we've started decorating for Christmas. Jake couldn't get over all of Mommy's cool stuff. And thanks to Grama Cindy, we now have quite a snowman ornament collection. YAY! Mimi is really good about Christmas decorations too, she bought him a Santa cookie plate and he's begging me to make Santa cookies already!

Jake helped me put our little tree together and hang all the ornaments he could reach on the tree. He's a great little helper.

Jake's due back in NY for tests on the 11th & 12th of December. I'll find out on the 12th how long we are going to have to stay and what the next step in Jake's treatment will be. Thank you for stopping by and checking in on Jake.

This Thanksgiving we have everything to be thankful for. We hope you all have Happy Thanksgiving, I know we are.

XO

Wednesday, November 20, 2002
Hello Jake Fans!

Well we settled right in at home, very happily I might add. Jake's appetite medicine has worked WONDERS! I haven't seen him eat like this in SOOO long.

Poppy left for Oklahoma this morning, we all were sad to see him go. Pop was a tremendous help and we totally appreciated him being there for us in NY.

Jake was a little sad this morning. So, I decided to take Jake’s mind off of Poppy leaving. We ventured out to the Mall this morning and to Toys R Us. He’s so funny, very particular about what he wants to shop for and add to his wish list. He’s such a little man. (Gina you will appreciate this one…) I had to totally skirt my way around the whole Optimus Prime issue. He wanted that transformer so bad, but see we already asked Santa for it. I couldn’t tell him he was getting it, I just had to reassure him Mommy & Daddy made sure that Santa knew that’s the one he wanted. He accepted that answer pretty good after about twenty times of me reassuring him. WHHHHHHHEEEEWEEEEEEE I have got to stay away from Toys R Us from now on!.

Jake started his oral chemo at home today. He has to take three pills (125mg total) once a day for five days. I'm anxious to find out how this is going to affect him. He handled the pill taking very well; I wasn't surprised at all (YES ARE YOU KIDDING? BRIBERY WAS INVOLVED).

We had a play date with Harrison yesterday **SEE PHOTOS**. Of course Jake wanted to play with everything Harrison had and was playing with. Typical almost 4-year-old stuff. Jake said he had a lot of fun and I really enjoyed watching the boys play OUTSIDE the hospital. It was so good visiting with Gina too. Harrison is heading back up to NY this week for more tests. Please help me pray for good test results for him next week.

That's all for now, I'll update when I have more to ramble about. I appreciate all of you checking in on Jake and saying a prayer when you think about him.

XO

Saturday, November 16, 2002
Hello Jake FANS!

We are HOME!!
The flight was great Thanks to CAN (Corporate Angel Network)We (Me, Poppy & Jake) flew courtesy of the VF Corp. They make things like Wrangler, Lee & Jansport porducts. The pilots Bud & Mike were especilly nice and made sure we were very comfy. The flight was great and we all caught a nap. Before we knew it we were on the sweet gorund of NC and Daddy was right there waiting. Jake practically jumped into his arms. He was so glad to see him as we all were!

Jake's a different child this morning, so happy to be at his home! We got unpacked and settled a bit before we knew it...it was BED TIME. We all slept like rocks, I was the first one up this morning at 9:30AM I wish it could be like that more often. Sleep does a body good!

We saw the Docs at Sloan yesterday morning. Jake checked out good. They all want him to FATTEN UP. "He's too skinny" said Doc LaQuaglia. RIIIIIIIIGHT....He's preachin to the choir! We are trying an oral med that should help Jake's appetite. I wanted to ask Doc LaQuaglia where he hides his wings, cause the man is an absolute angel in my book. He's an awesome surgeon. I have read so many testimonies about the miracles he's preformed, and he never takes the credit. He just points to the ceiling and says "It's HIM not me". We are so thankful for everything they've done.

Anyway, Monday Jake goes to clinic to see Doc McMahon and I'll update then on what's happening next and such...

Thank YOU ALL for ALL your prayers and words of encouragement. We have ALOT of wonderful people in our lives that care an awful lot for all of us and we are very grateful for everything everyone has done for us!!

Thanks for stopping by and checking in on Jake. He's SO glad to be home, he's a different child. It's awesome!

Thursday, November 14, 2002
Hello Jake Fans!

We are HEADIN SOUTH tomorrow!!!!! Yep, we are OUTTA HERE!! YAY!!!!!

Me, Poppy & Jake are flying out Corporate Angel tomorrow afternoon. YAY, I’m so glad and Jake is too! We actually meet with all the Doctors tomorrow morning first thing so I’ll update on the next step when we get home and settled.

Thanks for all the prayers and support. We’ll see y’all soon!

XXOO

Wednesday, November 13, 2002
Hello Jake Fans!

Jake has left THE HOSPITAL!!! (A little humor for all you Elvis fans) I know my spouse will enjoy that.

Anyway, we are snug as a bug at the Ronald McDonald House. Yesterday after an eventful day at the hospital Jake decided to go to sleep for the night at 5PM. Needless to say Jake woke up this morning at 4:30AM! and didn't want to go back to sleep...SO he's quite comfy and snoozing now.

I'm meeting with Doc Kushner (oncologist) tomorrow and should know the game plan then. I'll update when I know the agenda.

THANK YOU ALL for all the wonderful words of encouragement and prayer. We appreciate it very much.

XXOO

Tuesday, November 12, 2002
Tuesday Afternoon**

Jake's still playing up a storm here in the playroom. He's wearing the Child Lifer's out up here. We got to meet Michael J. Fox this afternoon. He's SO NICE !! and really good with kids. Jake tried to give him a five dollar bill and then told him he looked like Abe himself. How funny is that? Anyway I thought it was really nice of him to tke the time to come by and visit with the kids. I'll post the photo when I get a copy. I'll update tomorrow...

Tuesday, November 12, 2002 **Morning**

Hey It's Mommy here... Jake's doing GREAT!

I just spoke with the surgeon and he says the fluid is alot better than yesterday and Jake CAN GET OUT OF THE HOSPITAL TOMORROW!! yay! He's eating, drinking, going potty and yes still giving me & Poppy lots of GRIEF! HOORAY FOR THAT! He's a fighter and is doing really well.

I don't know how long we will stay in NY, I'm hoping we get to leave later this week. I'll advise when I know.

I'll have Auntie Pat update if I can't tomorrow when we spring this joint.

THANK YOU ALL FOR ALL YOUR PRAYERS AND ENCOURAGEMENT!
XXOO

Tuesday, November 12, 2002
Hey It's Mommy here... Jake's doing GREAT!

I just spoke with the surgeon and he says the fluid is alot better than yesterday and Jake CAN GET OUT OF THE HOSPITAL TOMORROW!! yay! He's eating, drinking, going potty and yes still giving me & Poppy lots of GRIEF! HOORAY FOR THAT! He's a fighter and is doing really well.

I don't know how long we will stay in NY, I'm hoping we get to leave later this week. I'll advise when I know.

I'll have Auntie Pat update if I can't tomorrow when we spring this joint.

THANK YOU ALL FOR ALL YOUR PRAYERS AND ENCOURAGEMENT!
XXOO

Monday, November 11, 2002 at 04:54 PM
*****UPDATE*****5:00pm

Well they finally moved Jake back to Sloan today. He is in the POC (pediatric observation unit)where they can monitor the fluid on his lung. It is a large private room. They will probably stay there for a day or two, then get moved to a regular room.

Dad left for NC today, I'm sure they will miss him. Poppy
is still there to lend a hand. Chanda had Jake up and moving today, it really helps to get him up and about.

Thats all I have for today, I'll update again tomorrow. Keep praying for a speedy recovery

Auntie Pat

*****UPDATE*****8::30am

I spoke to Chanda this morning and Jake is doing great. He is eating and drinking. Chanda got him up and standing this morning and will get him walking today. They took an x-ray this morning and are waiting on the results.

I will update as soon as I know more.

Auntie Pat

Monday, November 11, 2002 at 08:22 AM
*****UPDATE*****

I spoke to Chanda this morning and Jake is doing great. He is eating and drinking. Chanda got him up and standing this morning and will get him walking today. They took an x-ray this morning and are waiting on the results.

I will update as soon as I know more.

Auntie Pat

Sunday, November 10, 2002 at 05:24 PM (CST)
*****UPDATE*****5:30pm

Well, Jake is still doing great. They removed all the tubes, although he is sill getting a minimal amount of oxygen. They did not move in back to Sloan today. He has a little bit of fluid in the bottom of his left lung so they are going to keep him in Cornell a bit longer. Hopefully they will move him tomorrow. While I was speaking to Chanda, Jake was saying how hungry he was, so Chanda went to get him some food.

Its been a good day and Jakes recovery is moving along. I know Chanda and Brian appreciate your prayers, so, keep the prayers coming. I'll update again tomorrow.

Auntie Pat

*****UPDATE*****1:30pm

Jake is doing wonderful today. He asked daddy for goldfish at 4:00 this morning, so he went to the store and got them. He ate about 20 goldfish, and a drink. When Chanda got there this morning he had some sunny delight. They moved him to a chair this morning so he could watch the boats and he has been there all day. He asked Poppy to get him a happy meal and ate 1/2 of a chicken nugget and more sunny delight. He also had some milk.

They have been blowing bubbles to try to get his lungs moving.

They are going to remove the arterial line today, they are not sure about the chest tube. They are arranging transportation back to Sloan this afternoon. I'll update again when I know more.

Keep Jake in your prayers. His recovery this time has been amazing.

Auntie Pat

Sunday, November 10, 2002 at 1:34 PM
*****UPDATE*****

Jake is doing wonderful today. He asked daddy for goldfish at 4:00 this morning, so he went to the store and got them. He ate about 20 goldfish, and a drink. When Canda got there this morning he had some sunny delight. They moved him to a chair this morning so he could watch the boats and he has been there all day. He asked Poppy to get him a happy meal and ate 1/2 of a chicken nugget and more sunny delight. He also had some milk.

They have been blowing bubbles to try to get his lungs moving.

They are going to remove the arterial line today, they are not sure about the chest tube. They are arranging transportation back to Sloan this afternoon. I'll update again when I know more.

Keep Jake in your prayers. His recovery this time has been amazing.

Auntie Pat

Saturday, November 09, 2002 at 03:23 PM
******UPDATE******3:30pm

Jake is still doing fantastic, They removed the ventilator this afternoon. They have him on a minimal amount of oxygen. He still has the chest tube and the IV. Chanda hopes they will remove the tube tomorrow. He has been watching TV and playing with his transformers. When I spoke to Brian, Jake was taking a nap. I don't know if Chanda will call again tonight, or wait till morning, but I will update when she calls.

Pray,Pray,Pray for a speedy recovery.

Auntie Pat

*****UPDATE******8:45am

I talked to Chanda this morning, Brian stayed with Jake last night and Chanda went to get some sleep. When she walked in this morning Jake was wide awake watching cartoons, pointing to the commercial lipping (he can't really talk with the ventilator) I want that!. Transformer in one hand and Cassie the dog in the other hand (Nanook has been dissed, sitting on the window sill facing the East River)

Jake has had no fever since 10:00 last night, blood pressure is stable and he is receiving the minimal amount of sedation medicine. They stopped the ventilator this morning and he was breathing fine. They took X-rays this morning and if no fluid they will take him off the ventilator. The chest tube has been clear for 24 hours, a good sign. He is doing very well and Chanda and Brian are very happy.

I will update later after I speak with Chanda again. Her cell phone is still turned off, so for awhile you will have on rely on the page for updates.

Keep Jake in your prayers

Auntie Pat

Saturday, November 09, 2002 at 08:41 AM
*****UPDATE******

I talked to Chanda this morning, Brian stayed with Jake last night and Chanda went to get some sleep. When she walked in this morning Jake was wide awake watching cartoons, pointing to the commercial lipping (he can't really talk with the ventilator) I want that!. Transformer in one hand and Cassie the dog in the other hand (Nanook has been dissed, sitting on the window sill facing the East River)

Jake has had no fever since 10:00 last night, blood pressure is stable and he is receiving the minimal amount of sedation medicine. They stopped the ventilator this morning and he was breathing fine. They took X-rays this morning and if no fluid they will take him off the ventilator. The chest tube has been clear for 24 hours, a good sign. He is doing very well and Chanda and Brian are very happy.

I will update later after I speak with Chanda again. Her cell phone is still turned off, so for awhile you will have on rely on the page for updates.

Keep Jake in your prayers

Auntie Pat

Friday, November 08, 2002 at 02:25 PM
*****UPDATE*****2:30

I spoke with Chanda again a little while ago and all is still going well. They have not taken Jake off the respirator today due to fluid on his lungs and they have to stablize his blood pressure. Other wise, he is doing very well. He is talking, sticking out his tongue at the nurses and breathing very well. He is a trooper! I will update again later if Chanda calls me.

In the mean time keep praying for a speedy recovery.

Thanks
Auntie Pat

*****UPDATE***** 8:00am

I just spoke to Chanda and Jake is looking really good. He had a very peaceful night. They did move him to Cornell and put him on the respirator last night but are reducing the sedation medication in hopes of removing the ventilator this morning. Jake is responding to questions and his respiration rate, which is above the ventilator, indicates that he is not in any pain. His blood pressure is stable and he is doing very well this morning.

I will update again as soon as I hear back from Chanda. Cell phones are still turned off and they will be in the hospital all day. Chanda sounded very upbeat when I spoke to her.

Please keep praying and I will update as soon as I can.

Auntie Pat

Friday, November 08, 2002 at 08:05 AM (CST)
*****UPDATE***** 8:00am

I just spoke to Chanda and Jake is looking really good. He had a very peaceful night. They did move him to Cornell and put him on the respirator last night but are reducing the sedation medication in hopes of removing the ventilator this morning. Jake is responding to questions and his respiration rate, which is above the ventilator, indicates that he is not in any pain. His blood pressure is stable and he is doing very well this morning.

I will update again as soon as I hear back from Chanda. Cell phones are still turned off and they will be in the hospital all day. Chanda sounded very upbeat when I spoke to her.

Please keep praying and I will update as soon as I can.

Auntie Pat

Thursday, November 07, 2002 at 08:53 PM (CST)
*****UPDATE*****9:00

The tumor has been removed and they are closing up. All went well, they had some difficulty getting aroung the scar tissue, but were able to remove the tumor. Chanda still does not know if Jake will be moved to Cornell or stay at Sloan.

I will update again in the morning. Keep praying for Jake's recovery and for Brian and Chanda as well.

*****UPDATE*****5:30pm

Chanda and Brian spoke to the doctor this morning and were told that Jacob's tumor is more in his chest cavity between his heart and his spine. They would not be doing interoperative radiation because the tumor is smaller than the one that was on the right side. They are also not yet sure if he will be transported to Cornell after the surgery, they have to see how it goes.

Jake was not taken to be preped until 3:30 and the surgery would not start till about 4:30. Chanda and Brian will both have their cell phones turned off while at the hospital due to the reception there. I will keep the page updated as often as I get updates from them.

Please keep them all in your prayers at this critical time.

Thanks
Pat

Thursday, November 07, 2002 at 05:29 PM
*****UPDATE*****

Chanda and Brian spoke to the doctor this morning and were told that Jacob's tumor is more in his chest cavity between his heart and his spine. They would not be doing interoperative radiation because the tumor is smaller than the one that was on the right side. They are also not yet sure if he will be transported to Cornell after the surgery, they have to see how it goes.

Jake was not taken to be preped until 3:30 and the surgery would not start till about 4:30. Chanda and Brian will both have their cell phones turned off while at the hospital due to the reception there. I will keep the page updated as often as I get updates from them.

Please keep them all in your prayers at this critical time.

Thanks
Pat

Wednesday, November 06, 2002
Hello All-

Daddy & Poppy made it safe & sound. YAY!

Today's clinic visit was crazy as always. We were shuffeled here, there and everywhere, but eventually got everyhting done. Thanks everyone for helping me pray, cause Jake did not move a muscle for the CT scan today YAY! Brian and I are so proud of him!!

After the CT scan we were off to FAO Schwartz and boy that place is cool, but I like Toy's R Us better. Anyway, after FAO Schwartz we took off accross the street for a tour of Central Park. In a horse and buggy style that is... WAY COOL! Central Park sure is pretty and the views of NY are fantastic!

Tomorrow's surgery has been scheduled for 2:45PM, It will be a LONG DAY for Jake until they take him back for surgery, cause he can't have any drink or food. So, it will be like torture. That's right I just love to torture my kid, he hasn't been through enough already. Seriuosly, I was told a few kids might not have surgery tomorrow, so HOPEFULLY Jake will go earlier.

Tomorrow's surgery is just as serious as the last. He has Chest mass in this one. Brian and I will speak to the surgeon tomorrow and get more detail. Nope we didn't get to speak to him today cause he's out of town. Nerve Wracking...YES! Our nerves are SHOT and I'm on edge bigtime. I'll have Someone update the page when surgery starts tomorrow.

Thank you all for helping us pray for Jake, especially tomorrow. I've met with the Pastor here and prayed with him. I have cried so many tears these past two months. Jake is our world, our everything and this is extremely painful for us to have to watch him go through this again. That blasted tumor has got to come out and he has to be okay, he just has to. I'm praying God has mercy, and guides the surgeon to the tumor to get it OUT!

Thanks again for reading my rambling's on.... It's a great way for me to get alot off my chest and out of my broken heart. I really appreciate all the prayers for Jake and us, we love you all.

** I will not be checking my email for a few days, please just leave messages in the guestbook**

XO

Tuesday, November 05, 2002
Hey we are here!

Well the flight was fine and Jake fell asleep like he most always does. Thank Goodness, cause he was working my last nerve in the Airport pinging off every wall. Not to mention we were selected for the security check. You know the shoes off pat down and spread EM' search. Well, not that kind of search.. but you know what I mean.. HA! I was not amused in the least bit. Especially since Jake was running around and around the security people working their nerves too. Well we FINALLY got on the plane, seats ALL THE WAY IN THE BACK and got settled.

New York is beautiful at night. The lights are incredible. Jake wasn't impressed though. Oh well....

Today's clinic visit was shorter than I thought. His CT scan is scheduled for Wednesday WITHOUT anesthesia. This is a BIG thing cause he normally has to be put under so he does not move. PLEASE PLEASE PLEASE HELP ME PRAY HE COOPERATES AND LIES VERY STILL FOR THIS SCAN! Jake is at that stage where he doesn't want to listen or cooperate very well when he needs anything medically done. I can't hardly blame him, but LORDY I NEED THOSE PRAYERS TOMORROW. The Docs couldn't get the anesthesia scheduled tomorrow. WHY?? Couldn't tell ya, but if we don't get a clear picture it could push the surgery back a few days. UUUUGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!

Maybe tomorrow we can get a chance to show Poppy some of New York City?? Jake's so excitied about his Daddy & Poppy coming to see him he's a little monster today!!!

Thanks for checking in and as always for your prayers and loving support. I'll update after tomorrows festivities at clinic.
XO

Sunday, November 03, 2002
Hello Jake Fans-

Well right now it’s a busy day at the Courtney house. I’m washing, folding and packing for our trip to NY.IT’S COLD UP THERE BBBBRRRRRRRR!!!! Jake’s not ready to make the trip back up. He does not like to leave his Daddy. It’s getting harder and harder for all of us. Jake and I are heading out from Charlotte Douglas tomorrow around 4PM. We should be at the Ronald McDonald tomorrow by a decent hour I’m hoping. Daddy gets in Tuesday night and Poppy is coming in Tuesday afternoon. Jake will be very happy to see them both. Jake’s scheduled for a CT scan Tuesday morning, it should be an eventful morning at clinic as always….

Brian and I got out last night for dinner and a movie. Wow that was really nice! Ms. Heather watched Jake for us and apparently they had a really good time. At dinner I looked at Brian and asked him what the date was. He said, “It’s November 2nd”. I couldn’t believe it, it was 2 years yesterday since Jake’s diagnosis. How time flies…we both thought he’d be healthy and growing up normally by now. How naïve? I hate to be pessimistic, but our world has been filled with such sadness and heartache these past two years.

I’m going to have Auntie Pat update the page for us on Thursday the 7th. She should be able to update whenever I get updates, which usually is about every two hours.

That’s all for now, I’ll have Brian update when we arrive and get settled. That’s all for now. Thanks for stopping by and checking in. We appreciate all of your continued love and support.
XO

Saturday, November 02, 2002
**New Pictures from Football Friday Night!**

We had a blast Thank you very much Northwest Cabbarus High School!! It was VERY COLD, we hung out a long as little man was willing but he was ready to go home after about an hour. He had enough of being confined to the bleachers, he wanted OUT ON THAT FIELD WITH THOSE FOOTBALL PLAYERS SOOO BAD! He actually threw a "Courtney fit" when the game started because I think he thought he was gonna play with his new friends, too bad the news crew didn't catch that to put on the air...

If you saw the news last night on channel 3 you saw Jake telling the ref "let me do it" to do the coin toss and hollering "Football Friday Night"!! He was precious. A few of our friends showed up for the festivities. Thank you Auntie Pat, "Tot, and John Bouk for being there to watch Jake with us. Congrats Northwest on your win against Statesville!!

Friday, November 01, 2002

Hello Jake Fans!

Well Halloween was ALOT of fun for all of us. Jake got WAY TOO MUCH CANDY. I took him to my work place and he racked up !! Thanks everyone for letting Jake trick or treat!

Jacob decided to switch Halloween costumes yesterday. **See Photos**

**Tonight Jacob has been invited to be the honorary Team Captain for Northwest Cabarrus High school football game vs. Statesville.
Details:
Date- Friday November 1st
Time-7:30PM
Location-Northwest Cabarrus High
football game vs. Statesville.
He'll be the "little giant #12" umong all the Big giant football players!

Jake and I are scheduled to leave Charlotte on Monday for NY. If anything changes I'll keep you posted. Otherwise I'll update once we've arrived safe & sound.

Have a great weekend and thanks for stopping by and checking in on Jake.
XO

Friday, November 01, 2002
Hello Jake Fans!

Well Halloween was ALOT of fun for all of us. Jake got WAY TOO MUCH CANDY. I took him to my work place and he racked up !! Thanks everyone for letting Jake trick or treat!

Jacob decided to switch Halloween costumes yesterday. **See Photos**

**Tonight Jacob has been invited to be the honorary Team Captain for Northwest Cabarrus High school football game vs. Statesville.
Details:
Date- Friday November 1st
Time-7:30PM
Location-Northwest Cabarrus High
football game vs. Statesville.
He'll be the "little giant #12" umong all the Big giant football players!

Jake and I are scheduled to leave Charlotte on Monday for NY. If anything changes I'll keep you posted. Otherwise I'll update once we've arrived safe & sound.

Have a great weekend and thanks for stopping by and checking in on Jake.
XO

**Wednesday AFTERNOON UPDATE**

The surgery has been moved back ONE DAY. I just received a phone call stating the surgery will be on Thursday November 7th. Jake will be having pre-op tests before hand. So, I'm sure we will be leaving sooner than we thought....??

Jake and I had a blast today at the YMCA swimming, he's getting to be a little fish! He put those water wings on and JUMPED right in by himself. He's so brave, well we already knew that huh?

I'll update again after I get a call to confirm what is on the agenda next week.

Wednesday,October 30th, 2002

****************************************
The surgery has been scheduled for Friday November 8th, 2002. I will update with further details like when we are leaving etc...when I have them.
****************************************

Tuesday, October 29, 2002

Hello Jake Fans-
WE ARE STILL WAITING TO HEAR WHAT'S GOING ON WITH THE SURGERY....UUUGGGHHH….!!

LAB NEWS-
Well Jake's counts are FINALLY looking good!
White's 2.3
HGB 9.5
PLATELETS 115,000 YAY!!

Breaking News-
Jacob has been invited to be the honorary Team Captain for Northwest Cabarrus High school football game vs. Statesville. COME ONE COME ALL!!!!!
Details:
Date- Friday November 1st
Time-7: 30PM
Location-Northwest Cabarrus High

How exciting!! I think Brian and I are so excited we can hardly contain ourselves. I’m hoping that all goes as planned and he’s able to attend. It will be a moment to remember.

On the home front we are anxiously awaiting news for a surgery schedule. I feel like pulling all of my hair out! I hate waiting, it's TORTURE! Is that dramatic enough or what? Jake is keeping himself occupied by watching Sponge bob and Scooby. Oh and let's not forget TRANSFORMERS!! By the way McDonald's is now offering transformers in their happy meals and Jake thinks we have to go there EVERYDAY FOR LUNCH NOW! YUCK! Sorry folks, but Mickey D's ain't my favorite place if you know what I mean? In the end it doesn’t matter anyway, cause Brian and I just end up doing anything to see that kid smile.

Well our weekend was a blast. We had so much fun. Mimi kept Jake for us on Sunday and Brian and I got out and went to see “The Ring” I cannot close my eyes for fear of that spooky movie. It ROCKED! If you get the chance, GO SEE IT!!

All right, I’ve rambled ENOUGH! Jake and I are going to make the best of his free time before he heads back up north. He's going swimming at the YMCA tomorrow. He's very excited about that!

I will update as soon as I have a surgery schedule. Until then, thanks for stopping by and checking in on Jake.
XO

Saturday, October 26, 2002 TOO LATE TO STILL BE AWAKE!
Hello our faithful Jake Fans!

Well our weekend has been really good so far. Friday we met with my co-workers for lunch, it was really nice to see everyone again. I miss being at work alot. Thank you to everyone for the wonderful lunch. We really appreciate you all being so kind and generous. I'm just so glad that Jake was feeling good enough for a visit. He had a blast playing with everyone. He zonked out on the way home :o)

Saturday Mimi came over and sat with Jake while Daddy & Mommy made a trip to Santa's office. I swear, Santa is getting a little STEEP in his prices this year! YIKES! Anyway, let's just say Jake's list was slimmed down a bit. WHEW!!!!!!!!!!!!!...I couldn't take writing anything else down on that list. I think my child knows every toy that is made!

The time out was fun for Brian & I, we needed that and we had a blast shopping for Jake. After that was done we rushed home to get ready for the Camp Care Halloween Party!!! It was a blast! Jake was ALL OVER THE PLACE! The wild man was in action. Man that child can work a room! It was really good to see our friends outside of the clinic/hospital environment. **SEE PHOTOS**

Well tomorrow we are going to carve our pumpkin, that should be alot of fun. I'm really looking forward to it. I'll post those pictures probably after Monday's clinic visit.

Thanks for stopping by and checking in on Jake!
XO

PS
Kenna Jake says he loves you and he was so upset we had to leave you.....:o(

Thursday, October 24, 2002
Hello Jake Fans!

Well Jake's counts aren't as high as I would have expected because he's getting the wretched evil crud again I think. You know the green snotty nose we all fear. No fever yet....I hope I didn't just jinx myself.

Anyway, his counts are as follows:
WBC 1.7
HGB 8.5
PLT 84,000

I'm sure I'll hear from NY today or tomorrow about and estimated time for surgery. I'll update as soon as I have any details.

Mimi is on her way up for a visit for a few days. It should be fun.

Thanks for stopping by and checking in on Jake!

Wednesday, October 23, 2002
Hello Jake Fans!

Well, I got the little man geared up for Saturday's Camp CARE party. I asked him if he wanted to wear the skeleton costume or Spidy... AND I GOT the same answer I got a month ago. "The skeleton costume STINKS Mom". Well.........I took that as he apparently is not going to ever wear that one again. It's a shame, it's brand new. Anyone want it? It's a size 3T It's adorable?? email me if interested.

Jake and I have been on the internet today fighting over the computer and finding cool Halloween things to liven up this caringbridge page. If you have a caringbridge page and have the time to do any of these things...here's a really cool link to learn how to do these things COOL CODES

Okay, brace yourselves for cuteness on the photos link. I'll update when I've got something new to share.

Thanks for stopping by and checking in on Jake!

Tuesday, October 22, 2002
Hello Friends-

This past week since we've been home has been really hard. We have lost two more preciuos lives to this hellacious disease.

I didn't get to tell the story about Jon, because I couldn't do it yesterday. Jon Powell was a little boy that had a transplant at Duke and we followed his progress via his web page. Jon went through the 3F8 trial and when Jake relapsed I emailed Melissa his mother for some information. She called me, pretty much immediately and put me in contact with Doctor Kushner at Sloan.

Melissa called me a few days before Jake and I left for NY this last time. She had read one of my journal entries and wanted to pray with me. I needed that so bad that day, and she knew it. I couldn't thank her enough. I cannot imagine their pain today, but I know they are completley surrounded by loving family members and friends. Our thoughts and prayers are with you both.

http://www.caringbridge.com/wv/jonpowell/index.htm
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

I received a call from Doctor Kushner last night. He's pretty excited that Jake's count are looking good and wants another set of labs done here on Thursday. Maybe we will be headed up north soon? When ? I don't know...I'm not even going to guess.

Here at home we are all glad to be together for now. I now have the WRETCHED CRUD and am trying to stay away from Jake. It's really hard, he knows I'm sick and all he wants to do is get in my face and kiss and love on me. GEE why doesn't he do that when I'm well? Go figure......

We are planning to take Jake to the Camp CARE Halloween party this Saturday. I was really hoping he'd get to do some trick or treating before he was due back up north. Looks like it will be fun. I'll update after I hear from Doc Kusher later this week.

PS
Autie Pat & Uncle Jeff's wedding was a blast! Jake was all over the place and as always, a complete HAM!
**SEE Photos**Congratulations you guys! We love you both very much!

************************************************************
Monday's update:
Jake's labs looked really good today.
WBC 2.5
HGB 8.7
PLT 72,000

I'm waiting to hear the word from NY on the surgery. I will update when I know something.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jesus has another angel in heaven today. Little Jon Powell passed away on Saturday the 19th. I am at a complete loss for words. I cannot imagine The Powell family's devastation right now. If you have a moment, say a prayer for Jon's parents. Here is the link to Jon's site.

http://www.caringbridge.com/wv/jonpowell/index.htm

Monday, October 21, 2002
Hello Friends-

Jake's labs looked really good today.
WBC 2.5
HGB 8.7
PLT 72,000

I'm waiting to hear the word from NY on the surgery. I will update when I know something.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jesus has another angel in heaven today. Little Jon Powell passed away on Saturday the 19th. I am at a complete loss for words. I cannot imagine The Powell family's devastation right now. If you have a moment, say a prayer for Jon's parents. Here is the link to Jon's site.

http://www.caringbridge.com/wv/jonpowell/index.htm

Sunday, October 20, 2002
Hello Friends-

The wedding was a blast. **SEE PHOTOS** We all had a wonderful time and enjoyed the company very much. It was a nice change of pace.

Jake's due back in clinic tomorrow for labs. I'll update when I get the chance. Jake's got a snotty nose, I'm fearful he's getting the WRETCHED CRUD once again.

That's all for now. Going to enjoy our Sunday together.
XO
Chanda

Thursday, October 17, 2002
Hello Friends-

Well Jake's platelets are sitting at 51,000 today. Up from 42,000 on Monday. This is good, but still not good enough for surgery. His marrow is absolutley hammered, it has never taken this long for him to recover. Who knows when surgery will be? I'll update when I know more about that situation. Doc McMahon wants to see him next week in clinic for labs etc...

On the home front, we are SO GLAD TO BE IN OUR OWN HOME. When we arrived home, it was a bit chilly. The house temp was 60 degrees. Sorry but anything under 70 is a blizzard in my mind. I went to turn the heat on and it didn't work. The heating and air company I called could not say whether they'd be out that night to fix it. SOOOOOOOOO we headed out to dinner and Target for an electric blanket to keep our honey buns warm. Of course when we were out we MISSED THEIR CALL! Well we have gas logs, but they really don't heat the whole house. My point here is that we did not freeze and the heat was fixed the next day YAY!

Jake is enjoying playing games on his computer, and watching transformers videos. I don't know what he enjoys more going to BLockbuster video to pick them out for rental or watching them. I swear that kid could go to BLockbuster everyday. HE IS WEARING ME OUT! Seriously, I have alot of fun watching him get excited about renting new videos. Last night I decided to go online and I bought the complete first season of the transformers videos for his very own. Let's put it this way, it was cheaper for me to do that...than keep renting them. UUGGHH, Blockbuster should only charge like .50 cents for those 30 minute flicks for pete's sake! WHAT A RACKET!

Anyway, Jake's eating is somewhat improving. He's still having loose bowel movements (sorry folks, I don't sugar coat it on this page....wait a minute, when do I ever sugar coat it?) but he runs to the potty everytime hollering "I need to go POOP!". He's really doing well with the potty training. He even asked to wear his underwear last night. I must say that he looks adorable in them. I can't get over how big he's getting. Alright, I've rambled enough. I'll update after the weekend. We are all looking forward to Auntie Pat's wedding and festivities this Saturday. I'll take my camera and post new photos hopefully Monday.

Thank you all for all the love & support you've shown.

XO

**Special prayers for the Strosnider family**

Little 5 year old Will passed away today. I know he fought hard this last month trying to recover from that horrible infection. His parents Carol & Bill need our prayers right now. I'm waiting on permission to post any arrangements for him and addresses for correspondence.

Monday, October 14, 2002
Hello Everyone-

Well Jake's platelets were sitting at 42,000 today down from 48,000 Friday's lab work. Good that they held on a bit, but not so good for surgery this week. The bad news is that Jake's surgery is being delayed until his counts cooperate. WHOOOOOO KNOWS? The good news is we are coming home tomorrow and will remain at home until Jake's ready for surgery. Jake's due in clinic (in Charlotte) Thursday for more labs and we will see then whether his platelets are high enough.

Even better news is that that we GET TO GO TO AUNTIE PAT'S WEDDING THIS WEEKEND! YAY! Yep Uncle Jeff and Auntie Pat are making it LEGAL THIS SATURDAY WAAAWHHHOOO!!! congratulations to two of our favorite people in the whole wide world. We have a very busy weekend, it's funny...all of the the NJ clan will be in NC celebrating with Pat & Jeff. Oh whatta weekend to be HOME!!!

All three of us are flying out tomorrow together and will be sleeping in our own beds this time tomorrow :0)

Thanks for all the encouragement and prayers, we really appreciate it very much.

I'll update again soon.
XO

Friday, October 11, 2002 at 02:56 PM (CDT)
Well CRUD,

The Tuesday Surgery has been cancelled. His platelets DROPPED again. Today they were 48,000. I was a little disappointed. It's okay though, this means it's not meant to be. I know that, I'm okay with that. This just gives us more time to have fun with our awesome kid, in a really cool place. With really neat people.

Jake's hemoglobin dropped to 8, up here that's transfusion time. That's fine too! The more O2 his system gets, the more energy he has. Here they transfused over 3 hrs. Before I knew it, we were in and OUT into the pouring rain.

Daddy is on his way up this evening. YAY!!!!! We are SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO excited. I'm hoping to do something fun while we are together in NY. Jake says he now wants Daddy to experience the Toys R Us store in Time Square. He says Daddy will protect him from the dinosaur. What am I chopped liver? I thought I did a good job of protecting him the other day. Go figure?

Jake's due back in clinic Monday for more labs and hopefully we will know where he stands on his counts. His platelets have to be 75,000 or greater for surgery. I'm guessing he'll be delayed another week or more. That's okay too cause they'll just give him what he needs until he's ready.

I think we are headed to Brick, NJ to hang with the Carbone Family this weekend. They are wonderful peopl and we are SO GLAD to have them as a part of our family.

Thank you ALL for the prayers and encouragement. We really appreciate it very much.

XO

Please help me pray for Harrison Nichols, he's in surgery right now. His family received the news yesterday that he might have to endure possily three of these surgeries to get all of his tumor. I know God is watching over Harrison and Jake. Our boys are here for a purpose! They are walking testimonies to God's love and awesome power!

XXOO

Thursday, October 10, 2002
Hello Jake Fans!

Well we had the day off today and I decided to take Jake to TIME SQUARE! Yep, we chartered NY's finest and got there for about 8 bucks. WHAT A TRIP! Jake kept hollering "Hey you maniac" to the taxi driver. Anyway the Toys R Us store in Times Square is the largest toy store in the USA they say. They have a ferris wheel that we rode. Of course if I'd known Tarrannasaurus REX was on the third floor I would have NEVER taken Jake up there. It totally FREAKED him OUT!

The Ferris Wheel ride was cool, but Jake was already terrified so it kind of ruined it for him. And it didn't help that everytime we got to the top the dinosaur was right there ROARRRRING! YIKES!! We called daddy to tell him all the excitement, and Jake says Daddy is not allowed near that store!

Wednesday's clinic & CT went fine. Afterward we hooked up with Harrison and his family in HOBOKEN, NJ. Grama Rose (Harrison's Grama) cooked a wonderful meal and the boys played and watched videos. It was really relaxing for us.

Jake is due back in clinic on Friday morning at 9AM. They are watching his platelet count. They are concerned that he won't be able to have surgery. As you all know Jake had to have platelets on Monday. His platelet count was 16,000, yesterday they were 68,000 this is a GOOD THING. I'm hopeful that the platelets will hang on and keep on multiplying. If not, I'm guessing he will be monitored for a few days and possibly transfused until he's ready. I could guess a million different scenarios. WHO KNOWS? I promise I will update you all as soon as I know what is going on.

Until then, Please pray for those platelets to HANG ON and MULTIPLY!

Thank you all for stopping by and saying a prayer for Jake.

**Special prayers for Harrison Nichols and his family**
Harrison is due for surgery tomorrow here in NY. Please help me pray for his strength,resilience and to heal quickly and for his family's strength.

Another prayer request goes out for Margie Rutowski's family. Margie passed on Tuesday. Please help me pray for peace in her family's heart. Jake and I met Margie for the first time in April of this year. I knew from the moment I met her she was one of the neatest people I'd ever met. Spread your wings and fly Marige.
XO

Tuesday, October 08, 2002 at 08:24 PM (CDT)
Hey, it’s dad. I took Jake and Chanda to the airport for another trip to New York. I have had a lot of physical and emotional pains in my short life but today has really taken its toll. It would be hard to find something that hurts worse than your family leaving on a plane without you. I have taken them to airports many times but this one hurt. I just spoke with Chanda and they have made it safely to the Ronald McDonald House in Manhattan. They are scheduled for CT scans tomorrow. I have to wait until Friday to join them. So far the surgery is still set for the 15th, everyone please pray for Jacob. This one will be as tough on him as the last one.

For any correspondence, the address is:

Ronald McDonald House
Jacob Courtney, Room 903
405 E. 73rd Street
New York, NY 10021

Monday, October 07, 2002
Hello Everyone-

Well Jake's platelets DROPPED to 16,000 so he had to get plateletes today. What a drag, I was really hoping and praying his platelets would have recovered by now. His WBC is 2.1 and his hemoglobin is holding steady at 9. His ANC is pretty good.

We leave tomorrow for NY, Jake does not want to go. I can't hardly blame him. I'll have Daddy or Auntie Pat update when we arrive.

His antibiotics are finished and he's only on TPN which is being shipped up to us in NY. His appetite is picking up slowly. I'm hopeful he'll be eating pretty good in a few days.

I'll update as soon as I can. Thanks for all the prayers.
XO

Saturday, October 05, 2002
HEEEEEEEEEEELLLLLLLLLLLLLOOOOOOOOOOOOOOO Everyone!

Jake's White's are Finally 4.1!! The GCSF STOPS TODAY HOORRAAYY!!!! His Platelets are still 27,000 and his Hemoglobin is 9. I think those platelets are holding and I'm praying they will multiply rapidly over the next two days!

Jake has been extremely tired. He's getting some much needed rest. He's eating little bits here and there and is still on TPN. He's also receiving ROCEPHIN (antibiotic) Thru his I.V. for two more days. He's taking another antibiotic by mouth, but is having a hard time and dry heaves terribly.

I'll update Monday after clinic. THANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOUTHANKYOU for praying for Jacob, he's so awesome.

XO

Friday October 4th
Jake's labs are looking pretty good. His WBC is 2.1, his Hemoglobin is 9 and his platelets are 27,000. Doc McMahon wants home health to come out tomorrow and draw another cbc (labs) and see what those platelets are doing. Please pray specifically for Jake's platlets TO MULTIPLY BY THE THOUSANDS QUICKLY and for his strength. He's really wiped out.

PS
He ate a 1/2 ham sandwhich last night for dinner and another at 11AM this morning. HOORRAAYY!! :0)

I'll update tomorrow when I know what's going on.
Thank you with all my heart for your continued support, prayers and encouragment.
XO

Thursday, October 03, 2002
Hello All-

Well we are home finally. We are exhausted, but so grateful to be home. I wish I sounded a little more upbeat but I can't. We leave for NY on the 8th. We get a whopping 4 days at home as a family. Yes, you can bet we will make the most of it.

Jake's due in NY on the 9th for the usual labs and at 12:30PM he will have a CT scan done. After that who knows, you just kind of do what they tell you needs to be done once you are there. I'll update once we get settled and I have time.

Jake is tired and sleeps alot latley. His little body is in overdrive. His spirit seems great, but my spirit is ALOT worn, these past two weeks were tough to take. I prayed alot and cried alot. Home health is coming to draw labs tomorrow. I'm hoping ang praying his platlets are on the rise. If not, he'll have to go in for a transfusion. That just makes me cringe thinking about having to go back. But, gotta do what's best for Jake.

Jake's White's are at 2300 today, his hemoglobin is holding on around 8 and his platelets are at 30,000.

We really appreciate all the encouragement and prayers.

I'll update soon if I have more news.
XO

**Special prayers for The Strosnider Family. Little 4 year old Will relasped with ALL earlier this month and has a really bad infection that put him in PICU a few days ago. This family has been through the ringer! Please pray for Will to regain his strength and FIGHT, and peace and strength for his Mom & Dad.
Thanks

Monday, September 30, 2002 at 09:49 AM
****UPDATE****

Jake’s counts are up to 900 today, GO WHITE CELLS GO. He will receive platelets today and is still on antibiotics. He is feeling better, but tires easily. Visitors need to be kept to a minimum, so please call first. Jake cannot be disturbed if he is sleeping so if the phone is busy, call back later. Thanks for your understanding and we will keep you updated.

As always, Please keep Jake in your prayers.

Thanks
Aunt Pat

Sunday, September 29, 2002 at 10:41 AM (CDT)
Hey, this is dad again. The white cells are on the rise, they are at .7 today. platlets have dropped to 28k and hemoglobin is holding steady at 10. I spent the night Friday and all day Saturday with Jake and he did a lot of sleeping, but I think that was because his white cells were growing. I am on the phone with Jacob and Chanda while I am updating this and it is very apparent he is feeling better. We appreciate all the prayers. Please call before visiting to make sure he is feeling good.

Saturday September 28th
Mom again...

Dad says Jakes labs showed his WBC at .4 again this morning. His Hemoglobin is up to 11 something and his platelets are down to 42,000. I was encouraged. I was hoping his white's would be higher. There's a reason for everything right?

Anyway, I'm headed back down to camp out tonight. I spoke with Jake this morning on the phone and he sounded pretty good. He and Daddy have a lot of fun while I'm not around I'm sure.

I'll have Daddy or Auntie Pat update again soon. Thanks for stopping by and checking in.....

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXoXO

Friday, September 27, 2002
Hello It's Mom here.....at home, by myself. Dad came in tonight to relieve me for som R&R. I can't sleep very well without my boys here with me. This is such a lonely feeling.

I cannot tell you how incredibly rough this past week has been. Jake has been in extreme pain and it's taken it's toll on me emotionally and physically. I feel like I've been beaten to a pulp. I can only imagine how Jake feels..... I want to thank everyone for the continued love and support. You guys give me strength and I need that!

Jake's WBC showed up with a WHOPPING .4 this morning, HALLELUJAH! and thank you prayer warriors! I saw the labs and started hollering and jumping around the room like a nut (what's new). Jake just laughed, I guess he was just glad to see me not crying for once. MAN what a wreck I am. When your child is sick or in pain, it's the absolute WORST thing to not be able to do anything to comfort or ease the pain.

I'm just hoping they continue to RISE! I feel like I'm at Duke with Jake and he's having his transplant all OVER AGAIN! Jake's bottom is slowly getting better. The abcesses are showing signs of healing and all day today Jake did not run a fever praise god!

The NY news I have is when Jake's WBC is stable and Doc McMahon feels like he'll be ready for surgery then we will head up. Doc McMahon is hopeful to meet the 10/15/2002 tenative date? I'm not, I think it will be delayed a week or more putting us up there the last week for surgery. Who knows, it's all in god's hands. I have no control, I have however prayed my heart out about it.

That's all the energy I have for this right now. Thanks for all the wonderful guestbook entries and prayers.

XO

Wednesday, September 25, 2002 at 07:49 PM (CDT)
****UPDATE****

Well, Jake is still in the hospital at CMC. His counts are still very low. His white blood cell count is only 200, he just about has no white cells at all. He is on very strong antibiotics, morphine and benadral. Jake has very bad diaper rash that has turned into an abscess on his rear end. Because his counts are so low, the sores are not healing. Jake is in a lot of pain and he is not eating very well. Doctor McMahon is very concerned about his white count. Chanda is really stressed so Please call before attempting a visit.

Please concentrate your prayers on Jakes white cells to grow, and keep Chanda and Brian in thoughts as well.

Aunt Pat

Monday, September 23, 2002 at 08:59 PM (CDT)
Dad again. Jacob had to receive platelets today. His counts are still hammered. His diaper rash is still causing him a lot of discomfort. His fevers are still going back and forth. Chanda is very tired but is doing an outstanding job of playing nurse to an unruly patient. Jacob feels so bad that he takes it out on mommy and the nurses, but we all understand that this is not the Jacob we all know and love. He is still on TPN and not eating. He has asked me to bring KFC’s popcorn chicken. I told him I would bring him whatever he wants. We have to wait for the fevers to stop for at least 24 hours before we can even think about leaving the hospital. That is all for now, keep praying for Jacob. Thanks.

Sunday, September 22, 2002 at 07:17 PM (CDT)
Jake is still in the hospital and the fevers have not went away. Sundays labs were: WBC .3 (300), HGB 9.2, PLT 26k. He received blood Saturday, that is why his HGB looks good. Jacob is having a hard time with his severe diaper rash but mommy is doing everything possible to make him comfortable. He is still not eating, but is on TPN and has gained three pounds. We would like to thank everyone for there continued support, kindness, and generosity. Chanda or I will update as soon as we can.

Friday, September 20, 2002 Evening...
Hello Jake Fans!

Well Jake is still in the hospital. Running those fevers here...there...and EVERYWHERE! He's in ALOT of pain from a severe diaper rash from the diarrhea he's been having from the antibiotics for the EAR INFECTION! And to top it off the GCSF is causing pain too. It's a never-ending story I tell ya.........

ANYWAY, well it will be a few days before he's well enough to go home I'm sure, maybe Monday?? WHO KNOWS! Jake's been to the hospital everyday except 3 days since the 3rd of September for either chemo or platelets or blood or clinic. We are both pretty exhausted. He's not eating and Brian said he would only get out of bed once today to go to the playroom. I guess that's better than nothing right? Anyway, Daddy is camping out with Jake today. I have been relieved for some R&R! :0)

Jake's counts were VERY LOW this morning. His whites are still .1, his hemoglobin was 7.... something and his platelets were about 38,000 so I'm sure some blood & platelets are on their way soon.

That's all I have for now, I'll update again as soon as I can. As always thank you all so much for the continued encouragement and prayers!

XO

Thursday, September 19, 2002 at 11:08 AM
Update:

Jake was admitted to CMC last night for a high fever. They determined this morning that he has an ear infection in his left ear. He has been on antibiotics since last night. They will probably be at CMC for a few days. He is receiving GCSF and will receive platelets today. His platelets are 12,000 and his white count is 100. He is having bone pain from the GCSF and is feeling pretty bad.

Jake is being a bit antisocial today, but all things considered, he has a right to be.

Chanda will update again when she can, until then keep Jake in your prayers.

Aunt Pat

Wednesday September 18th
Hello All-
Quick update...**Check out the new pictures** It's a Halloween Sneak peek!

Jake's counts are still being hammered pretty bad. He's holding on to his hemoglobin, but his whites are still .1. His platelets are 21,000 today so there will probably be a transfusion tomorrow. He's back on TPN and in ALOT of bone pain from the GCSF. It's really hard to watch him hurt like this. Pray for his strength and energy please!

I'll update again soon...
XO
****************************************

Monday, September 16, 2002
Hello All-

Well Jake was low on the platelets. He was sitting on 14,000. So he needed a filler up! Jake’s whites are still at 100 (that’s .1) YIKES!!! Can you tell I’m forced to watch a LOT of Scooby-Doo?? Ugh…Anyway the GCSF is continuing at home IV. I’m hoping those White’s GO UP UPUPUPUPUPUPUPUPUPUPUP!!!

Jake’s is being put back on TPN tomorrow. He’s not gaining weight. This is concerning since NY's surgery is on the horizon. Doc McMahon wants Jake to be beefed up. So whatever it takes right? I’m really hoping he gains a few pounds. He’s weighing in at 31lbs.

Well, Jake’s hospital visit as always was much longer than need be. Once again I’m forced to remember that I’m not in control here. There were a few highlights…we got to visit with our friend Harrison. Harrison got out of bed today and played with Jake in the floor in the hall. This little guy has been through the ringer the past few weeks. It was a pleasure to see him get up and play with Jake. Thanks Harrison, you continue to be in our prayers. We saw Miranda and heard she was doing better. YAY! Miranda!!

Home Health will be out on Wednesday for labs. I’ll update when I have more to share. Thanks for stopping in and saying those prayers. Okay well I guess that’s it for now.
XO

Saturday, September 14, 2002
Hello All-

Well, Jake got platelets on Thursday and he needed blood yesterday. Another night spent at the hospital, we got to the hospital at 1PM. His blood was hung at 9PM! Yes, we camped out at CMC last night AGAIN!

For some reason an antibody showed up in Jake's type & cross match yesterday. Antibodies are unheard of in immunosupressed children. So, this was a REAL SHOCKER to most everyone. Doc McMahon says he could have gotten this antibody from the platelets he received Thursday.

After waiting a really long time, I decided to ask if they could find out what was going ON! Well LOW and BEHOLD the antibody mysteriously disappeared. HUH? That doesn't make sense. I give up trying to figure things out this week. Jake received his blood and dose of GCSF at the hospital and we were released to go home this morning. YAY!

Jake's platelets were 30,000 this morning YEP you guessed it...he'll be getting some of those babies on Monday.

That's the latest and greatest. Thanks for stopping by and checking in on Jake. I'll update again after Monday's visit at the hospital.

Wednesday, September 11, 2002
UUUUUGGGGHHHHHHHHHHH!!!!!!! What a day!

Okay well we will begin this story by telling you that our clinic visit went well except for the part that Doc McMahon's Nurse Chris wasn't there today. This should have been a GREAT BIG SIGN that something wasn't going to go right today. Nurse Chris you are not allowed to ever take another day off again!

Jake's port access went fine, lab draws went fine too. But we ended up waiting for three hours to find out what Jake was LOW on. So, in the meantime we went to the floor to visit our friends and waste some time. We visited with our new friends Harrison and his Mom & Grama today. Harrison was admitted for fluids today, this last chemo treatment was hard on his little system. Harrison is really big into Transformers (robots in disguise). Everything is Harrison this and Harrison that, transformers this and transformers that. Jake has a Christmas wish list a MILE long now. Everything he sees on TV now he has me write it down for Santa :o)

We also saw Autumn, she looked great and played peek a boo with Jake in the hall before she headed home. Malpass family, you guys are always on my mind and in my prayers.

At about 1PM I decided to go back to clinic and find out what the hold up was. When I entered I was given the "thumbs up" sign by a stand in nurse from another area of the hospital that Jake was okay. WHAT??? Hmmmmm....I felt suspicious and requested a copy of his labs. I knew his labs couldn't be that good. Long story short, Doc McMahon had to call down to the labs himself to get Jake's labs. Jake's WBC is .2, his Hemoglobin is 9 and his Platelets are 17,000. Gee I'm guessing it's good to be on top of things?

Jake will be getting platelets tomorrow. He also starts GCSF tomorrow. This is the WBC booster. This causes him to have bone pain, so please pray for Jake to not have any pain and for those platelets to do the trick tomorrow.

Jake's lost 2 lbs (YIKES) down to 30lbs; Doc McMahon wants him to gain some weight by Monday. All bets are off I guess, Jake gets whatever he wants says McMahon.

That's all I have for now, hoping and praying all goes well tomorrow at the hospital. God give me strength AND PATIENCE! Thank you all for the prayers and encouragement. It's a wonderful feeling to know so many people stop by and check in on Jake's progress.

What a day...what a day!

XO

**Special prayer request for:

Margie Rutowski - Margie fell out of remission at Duke right after her transplant and has been sent home. All our thoughts and prayers are with you Margie!

Harrison - To bounce back quickly from these after effects of chemo and return to his normal energetic and adorable self.

Friday, September 06, 2002 at 03:49 PM (CDT)
Hello Jake Fans!

Jacob is HOME! He has one more short (outpatient) chemo treatment to do on Saturday at CMC and then he’s going to recover for about 3 weeks and head back up to NY for surgery. He’s doing pretty well so far. He threw up today just as we were going to leave so we waited around another 11/2 hours until it was safe to leave. He had more fluids and some more Zofran (anti-nausea).

Once we got home he asked me to cook him some chicken nuggets with ranch dressing, ketchup and mustard sauces on the side! He wound up eating 4 of them. I was happy about that…I’m still praying those stay DOWN! He’s had a lot of diarrhea this week from the chemo. Thanks to Harrison’s mom Gina we now have some AWESOME ointment for diaper rash situations!! Thanks Gina

Harrison & Jake both had chemo together this week. Harrison is a DOLL (**SEE NEW PICTURES**) and is going to have his treatment at MSKCC as well…. around the same time frame Jake is due back in NY. I’m just so thankful there’s a place on this earth that specializes in this wretched disease.

Jake’s counts will start to drop within 5-7 days from now. Monday Nurse Tina will come to the house and draw labs; Wednesday Jake’s due back in clinic. I’ll be praying he continues to hold food down and drink to keep hydrated.

This week was rough; I appreciate all your prayers and encouraging thoughts left in the guest book. It means a lot to us to know so many people care so much.

I’ll update soon, I’m being kicked off by Jake…he loves the computer!

XO

Friday, August 30, 2002
Hello Jake Fans!

Quick update:

Jake's counts are recovering and looks like he's still on track to start chemo on Tuesday. He's still got remnants of his cruddy cold, but for the most part he's trucking right along. He's still not eating much, but maybe by next week things will be better.

Today was a treat, we met our Rainbow of Hope friend Olivia and her Mom Julie at Chuck E. Cheese's for lunch. Alot of fun. **SEE NEW PHOTOS**

Thanks for checking in and praying for Jake, we appreciate it very much!

Till next time....
XO

Wednesday, August 28, 2002
**NEW PICS **
Hello All-

Well the past few days at home HAVE BEEN WONDERFUL! WE REALLY ARE GLAD TO BE HOME! :o)

Jake's got some kind of CRUD. Tuesday afternoon he started coughing and last night started running a low temp UGGGGGGGGGHHHHHHHHH! I just knew he'd be admitted at today's clinic appointment. So, I packed all our stuff up again and loaded it in my trunk and off we wnt to CMC.

Once we arrived, Jake was checked out by Doc McMahon and he seems to think it's a cold. SO, we got to come home. Jake's temp is teetering on the border-line so Doc gave Jake an oral antibiotic because he wants him to be able to START CHEMO on TUESDAY of next week. Jake's counts are HAMMERED RIGHT NOW! His platelets are only 47,000. His whites are low, but hemaglobin is holding steady. This chemo treatment will be INPATIENT. What a drag, but he has to be inpatient because it's a HIGH dose this time. Jake will be in about 5-days. It was so good seeing everyone.

Nurse Tina or will come out on Friday to draw labs. I'm asking for everyone to pray for Jake's cold to be better or GONE by the time he has chemo and for his platelets to be WAY UP by Tuesday or he'll have to wait for chemo, and we don't want any delays at all.

I'm hoping our long weekend with Daddy will be fun and relaxing. I'll update soon............

Thank you all for all the prayers and encouragement.
XO

Sunday, August 25, 2002
Hello Jake Fans-

Well, we are home finally! Yes we are very glad to be here. Corporate angel is AWESOME and we are so grateful. Jake is getting used to being at home again just fine. He's still hobbling around alot, he favors his right side. Each day will get a little better I hope. He's still just eating little bits here and there and drinking a little too, but is on TPN every 12 hrs at night. Jake's personality has changed a bit. When he doesn't feel good he's very clingly and very shy. We are limiting the number of visitors this next week because I don't want him to be uncomfortable. I hope you all understand.

Upon dishcarge from MSKCC we were hoping for at least two rounds of chemo treatments to be done at home, but the doctors said NO. They are NOT WASTING ANY TIME AND IT'S VERY SCARY FOR US. Jake will probably start chemo mid next week or the first week of Sept. I wish he could just catch a BREAK! We feel helpless, but know that it's all in God's hands. We have very limited time at home and then it's off to NY to Sloan for surgery on the left side in October. Doc Kushner is very happy with the surgery and hopes to start Jake on the antibody treatments maybe in November?? I'll explain that when the time comes.

We need LOTS & LOTS OF PRAYER. I know God hears me, if I thought it would help any more I'd scream out from the top of my lungs for his help, but I know he hears me and all the other prayers for Jake all over the USA. I want you all to know you ALL are awesome for praying and we appreciate it very much. We will never be able to thank everyone enough for everything that has been done for our family.

VERY Special thanks to:
The Carbone Family-
You guys stepped right in and opened your home, arms, and hearts to us, without even blinking an eye. You all are incredible and we love you....THANK YOU FOR EVERYTHING!

Poppy & Cindy-
Thank you for being there for emotional support as always. You guys keep us strong when we are weak. We love you both more than any words will ever be able to be expressed. You guys are wonderful Grandparents to Jake and we are blessed.

Auntie Pat-
Thank you for all your help updating the website for me and for the surprise visit up last weekend, it was so good to see you and we love you very much.

Mimi-
Thank you for braving NYC by yourself in the sake of your Grandchild and daughter, you are a good grandmother and we appreicated you being there...Thank you

All our Prayer warriors-
You guys are awesome and there aren't enough words to express how we feel in appreciation for all of your hard work.

This next week Jake has clinic on Wednesday, I'll update after that and advise on exactly when he's starting chemo again.

For right now we are going to enjoy the very short time we have together as a family again.

XO

Friday, August 23, 2002 at 07:20 PM
*****UPDATE*****

Well, Jake and Mom are on their way home. They got discharged today from the Ronald McDonald House and are heading back to North Carolina. They are very happy to be coming home for peace and quiet, and to see "Dad".

More updates tomorrow!

Aunt Pat

Tuesday, August 20, 2002
Hello ALL-

Saturday we were surprised by Daddy and AUNTIE PAT showing up at the hospital! WHat a thrill to have them both here. I didn't know who to hug first !! Daddy releaved me Saturday for some MUCH needed SLEEP. Mimi left for Atlanta Saturday for GA. THANKS MIMI FOR ALL YOUR HELP THIS PAST WEEK!!!

Sunday was okay for the most part, Daddy left for the airport around 5PM. We walked him to the elevators and Jake just cried. It really STUNK!

Monday Auntie Pat and her sister (Auntie Susan) returned to spend the day with us at the hospital. There was talk of Jake being released and POOF it just happened. We were outta there so fast, my head was spinning. Pat & Susan got the bulk of our things to the RMH and then Poof off we were to the Ronald McDonald House last night!!!!! YAY!!!! :0)

Auntie Pat spent the night with us last night here at the RMH. Today was a clinic day, the usual...labs, physical, etc... He's still on TPN, and home health will care for us a fews days while we are still here. At the time of the clinic appointment he hadn't thrown up at all and seemed alot more verbal and more energetic than the day before. He hobbles around, but he walks on his own and can crwal in and out of chairs slowly, but on his own.. He's alot like me, he doesn't want help (stubborn) Brian says GO FIGURE!

After we left clinic, we headed to the corner grocery store. I grabbed the normal JAKE STAPLES ie. baby goldfish and a lunchable. Well LOW AND BEHOLD he saw them both and wanted to eat. YEP he ate about 40 baby goldfish and a 1/2 a piece of ham (AND HELD IT DOWN)YYYYYYYYYYYIIIIIIIIIIIPPPPPPPPPPPPPIIIIIIIIIIEEEEEEEEEEEEEE!

We have to be back in clinic on Thursday and HOPEFULLY we will be released to come home to NC!! I'll keep you all posted.

Special Thank you to MIMI for coming up to help us last week and Auntie Pat, Auntie Susan for being here for me and taking care of us.

PS
We miss you Daddy! XOXOXOX until we see you again!

Thank you ALL for the prayers and support, we really appreciate it very much!!

Sunday, August 18, 2002
Hello Jake Fans!
Well Jake is walking and talking today. Good sign! Still no food or drink, but hey it will come sooner or later. TPN is doing the trick right now.He continues to vomit about two or three times a day, stomach bile only. It's getting beeter each day PRAISE GOD! This surgery was the BIG ONE. I think it knocked him WAY DOWN this one did.. Dr. LaQuaglia (the surgeon) will be seeing Jake tomorrow, this man is AWESOME. He's got a very peaceful look about him and great bedside manner. He's a very religious man and you can tell it. We saw Dr. Kushner yesterday, he was in his words very excited about the surgery and seems very positive that the left side "won't be nearly as bad of a surgery".

Daddy is here this weekend, what a relief! we miss him ALOT!

Still no word on when we are getting released to the Ronald McDonald house. Maybe this week? I'll keep ypu posted or Auntie Pat will. Thank you ALL for the PRAYERS!

Special Thanks to ALL OF YOU PRAYING SO HARD. PRAYER IS AWESOME!! AND THANK YOU TO AUNTIE PAT'S FAMILY you guys are AWESOME, AND everyone (ALL OUR NC FAMILY)who has pulled together and helped us in SO MANY ways, without you we wouldn't be as strong and able to keep going the way we are. It's very exhausting.

The rooms here are not private, I won't go into detail but while you are praying, could you send up a couple more for quiet and peaceful roomates??????

XXOO

We will update soon.
Love you all
The Courtney's

Friday, August 16, 2002 at 08:05 PM
*****UPDATE*****

Jake is pretty good shape today, although he has not started eating or drinking yet. He is still on the TPN for protein, and antibiotics for the fevers. It is a real effort for Jake to sit up by himself but Chanda is hoping to get him up walking soon. He has a small collapse on the top of his right lung that they are working on correcting with therapy. The doctors are pleased with the surgery and the progress Jake is making. They will be doing more scans some time in the next few days, and he had x-rays today. They are both very tired and worn out. Jake even told Chanda that he is cranky! Dad (Brian) will be there this weekend and maybe Chanda will be able to get some sleep, she really needs it.

Please pray for Jake to make a speedy recovery so they can come home. They need and appreciate all the prayers you are sending their way.

Just a reminder….The benefit for Jake is being held this weekend. The website is www.godstock.org.

Aunt Pat

Thursday, August 15, 2002 at 08:01 PM
*****UPDATE*****

Jake was moved back to Sloan Kettering yesterday. Today he had his chest tube removed. He is still on TPN for proteins. They are sharing a room with another family. Things are not as private in New York as they are in Charlotte. Chanda took Jake down to the playroom in a wheel chair today for a few hours to get him out of the room. He is still having pain, although they are trying to keep him comfortable. He is also running fevers. They are all pretty exhausted and just want to come home.

Keep praying for Jakes recovery and Chanda and Brian’s strength to keep going.

I’ll update again tomorrow.

Aunt Pat

Wednesday, August 14, 2002 at 12:28 AM
*****UPDATE*****

Jake is doing great today! The oxygen has been removed and he is up and playing with Aunt Susan and MiMi. He is sore and it hurts when he coughs or moves to much. Chanda says he looks really good. They are just waiting to be moved back to Sloan Kettering. She doesn't know how long they will keep him there, but they are both anxious to come home.

Keep them all in your prayers and thanks for your continued support.

Aunt Pat

Tuesday, August 13, 2002 at 05:51 PM
*****UPDATE******

Jake is doing wonderful, he is out of bed and sitting in a chair. They are preparing him for the move back to Sloan Kettering, which should happen tomorrow. They have removed the Foley catheter and the epidural. Things are looking better but they still have a long road ahead of them.

As Always - Please keep the Courtney family in your prayers.

Just a reminder for anyone who is interested, there is a benefit for Jake this weekend sponsored by Godstock at the South Rowan YMCA. They are an organization that provides assistance to families fighting life-threatening illnesses. They will match any donations made up to $10,000.00.

Please visit their website for information – www.godstock.org.

Aunt Pat

Monday, August 12, 2002 at 06:33 PM
*****UPDATE*****

Jake had the ventilator removed today and is breathing fine on his own. hooray!!!! He is still a little bit dazed from the sedation medication but is talking and looking wonderful and is wanting to get out of the bed. He is such an amazing child.

Chanda, Brian and Jake appreciate everyone’s prayers and concerns. Jake will remain in the hospital for a while and at some point be transferred back to Sloan. Chanda still does not have access to her email or a personal phone. As soon as Jake is able to accept visitors and phone calls I will post it on the page. Until then, as always, keep the Courtney family in your thoughts and prayers

I will update again tomorrow.

Aunt Pat

Monday, August 12, 2002 at 06:03 AM
*****UPDATE*****

My internet connection was down so I could not update yesterday. Sorry! I know you all have been waiting.

Jake's vital signs are good. The puffiness from the surgery is gone, the fluids are draining. Chanda says he has beautiful color and looks good. He is still on the ventilator and is sedated. Even though he is sedated, he can hear what’s happening around him. He will squeeze your finger if you tell him to, he tries to open his eyes even though he is not supposed to. They are hearing bowl sounds which is a very good sign. Jake is breathing above the ventilator, which is also good. They are supposed to take him off the ventilator today so please PRAY that Jake breathes like he is supposed to and his lungs are strong.

It will be a long haul in NY so please keep Jake, Mom and Dad in your prayers. PRAY! PRAY! PRAY!

I will update again this afternoon.

Aunt Pat

Saturday, August 10, 2002 at 06:10 PM
*****TODAYS UPDATE*****

Jake is in stable condition in ICU at Cornell Medical Center. He is still being sedated and is on the ventilator, the doctors do not want Jake to exert himself and to be very calm during recovery. His blood pressure is good, as well as his urine output and chest tube output. The puffyness from surgery is starting to subside. Chanda and Brian seemed to be in good spirits today but are still under alot of pressure.

Brian has to return home tomorrow but will go back to New York on Friday. Cindy and Poppy will be flying out on Monday and Mimi flies in on Monday. Jake also receives frequent visits from Aunt Susan. They have a good support system up there.

As always, please keep Jake,Mom and Dad in your prayers. I will update again tomorrow evening.

Aunt Pat

Friday, August 09, 2002 at 09:28 AM
********UPDATE********

Good Morning

Jake had a very good night and is resting well at Cornell Medical. He is in the intensive care unit in a room with 3 beds, each bed having a dedicated nurse. Jake is heavily sedated and is on a ventilator. The doctors want him to have complete rest so they will keep him sedated for the initial days of recovery.

Both Chanda and Brian will spend the day with Jake. She sounded good when I spoke to her this morning.

I will update the page as I get information. I don't expect to update again until tomorrow, but if I hear anything I will let you all know.

Thank you all for your continued support and prayers, I know it is appreciated.

Aunt Pat

Thursday, August 08, 2002 at 07:33 PM
*******UPDATE*******

As of 5:30pm Jake is in recovery and doing fine. The doctor came out and spoke to Chanda and Brian and all is well.

I will update again tomorrow after I speak to Chanda.

Aunt Pat

Thursday, August 08, 2002 at 04:11 PM
********UPDATE********

As of 3:00pm the doctors had finished removing what ever parts of the tumor that they are able to on the right side. The next step is radiation to the 2 tumor areas (right and left) and then close the incision. The surgeon was very pleased with the operation. Jake has received blood and platelets. After recovery Jake will be transferred across the street to Cornell Medical Intensive Care unit for a few days, then back to MSKCC.

There are no phone numbers for you to call and Chanda has no way to check her email. I will update the page as news becomes available.

Keep the Courtney family in your prayers!

Aunt Pat

Thursday, August 08, 2002 at 12:25pm
********UPDATE********

Jakes surgery started at 9:45am, as of 12:15pm things are going well. They have not reached the more critical areas of the tumor removal yet. The surgery will be a very long process. I will keep updating the page as I receive the updates from Chanda. Please remember to keep Jake and the Courtney family in your prayers.

As Chanda says "If there is ANYTHING WE NEED RIGHT NOW IT IS PRAYER. PLEASE PRAY PRAY PRAY ANYTIME you EVEN THINK about Jake. That's what we need the most."

Will update again in a few hours
Aunt Pat

Monday, August 05, 2002 HOT&HUMID!
Hello All YOU JAKE FANS!

H O L Y C O W what a great weekend and a very STRESSFUL MONDAY! Me, Jake, Aunt Heidi & Aunt Susan (yes Jake is picking up aunt's & unlcle's LEFT and RIGHT up here!) got up at 5AM this morning for the hike from Bricktown to NYC. Came thru uneventful and safe, no problems. Had a nice breakfast and hit the ground running in MSKCC. Between the radiation oncologist, the surgeon, the NP's and Doc Kushner it was a LONG day. Well everything WAS settled and then popped in OLE MURPHY. ....... SLIGHT change of plans. Apparently the IORT (inter-operative radiation therapy)machine door/sheild is not cooperating. It won't close properly. It's dismantled into peices and they are working on it right now. The surgeon says this has never happened before and hopes to perform surgery on THURSDAY first thing. First thing meaning 6:15AM be there and be ready to have Jake prepared. I'll keep the site updated as of any changes, but for now...THURSDAY is the surgery date.

YES I AM STRESSED OUT! Today was emotionally draining. Seeing exactly where the tumors are, the surgeon confirmed there will be two surgeries. One Thursday and another in a month or two after one round of chemo in Charlotte chemo.

I won't go into alot of detail, but this surgery is very serious and one tumor is almost wrapped around two of THE major arteries in Jake's body. I was truly devastated when I saw the scan up close and an explanation was given to where exactly they were. The surgery will be long and very intense. Dr. LaQuaglia is known all over the world and I feel Jake is in very good hands.

Jake's MIBG is good, no spreading of this cancer anywhere, PRAISE GOD! The doctor's are all encouraged from the scans, and bone marrow still being clean. Jake will havea god chance of geting his first antibody treatment by maybe November??? Still a long road ahead, it's all in God's hands.

If there is ANYTHING WE NEED RIGHT NOW IS PRAYER. PLEASE PRAY PRAY PRAY ANYTIME you EVEN THINK about Jake. That's what we need the most. All of our immediate needs are being met by The Carbone Family, this is our NJ family and they are AWESOME. We are truly blessed! They really love Jake and it shows.

Dad's coming in tonight and we are so glad!!!!!! We are miserable without him. Poppy & Grama are coming in on Wednesday night. I'll update again ASAP, Thank you all for the love, prayers and support.

XO

Sunday, August 04, 2002
Hello Jake Fans!

We are here!! The flight WAS ROUGH but very NICE. A six seater jet with leather and the nicest people I've ever met. Jake had two CEO's charmed the whole time. Thank you First Union / corporate angel for the fight up. NY is well....crowded and busy and awesome! I won't go into alot of details but Auntie Pat's sister Susan now "Auntie Susan" got us where we needed to be when. AND KEPT ME VERY CALM. She's the best ever and the best NYC driver I've ever seen!

Thursday's injection was done, Friday's MIBG went well. The clinic here is very busy and the Ronald Mcdonal House is very nice. We have to be back at the clinic tomorrow to met the docs for the first time. A bunch of people are coming with me. THANK GOD FOR THESE PEOPLE! I cannot say enough about them! Let's just put it this way, we are in very good hands here and very comfortable. Jake is spoiled rotten and is being such a good boy. I'll update about Tuesday's surgery when I have more details. Gotta go!

XXXOO

Thanks for all the prayers, love and support as always!

Wednesday, July 31, 2002
Well we are FINALLY off tomorrow for NY! Mom & Jake are flying on an "corporate angel" flight tomorrow at noon. Those folks are beyond awesome!

Once we land a car will take us to the hospital for the nuclear medicine injection. After that we are headed to the Ronald McDonald House. Friday we are due back at the hospital for the MIBG scan. After that is done we are done for the weekend. We are spending the weekend with Auntie Pat's family in NJ (The coolest Carbone's I've ever met).

Monday Jake will be due back at the hospital for more tests and labs, doctor consults etc.... I'm sure. Tuesday is the surgery and I don't have all the specifics on that yet either. I will post to the site with any new updates and I really appreciate all the prayers going up for Jacob and ALL THE LOVE AND SUPPORT FROM EVERYONE!

Talk to you all soon!
XO

Monday, July 29, 2002
Hello All-

Jake's Bone Scan came back fine. All is well with us, we took off for the beach last weekend and had a blast. Jake loved playing on the beach and swimming in the ocean. It was good therapy for us ALL TO GET AWAY. And for Brian and I to see Jake playing, and having FUN like a normal little boy on the beach. I think we brought home a TON of sea shells and SAND!

Yes, the stress level is high at our house in anticipation of Jake's surgery. WE ARE STILL WAITING on the specifics for Sloan Kettering. No news to report yet. As soon as I have all the details I'll post them on his site.

Thanks for checking in...
XO

Tuesday, July 23, 2002
Hello Jake Fans-

What a LONG DAY, but Jake did WONDERFUL TODAY!

We practiced on and off this past weekend lying very still, each time a little longer than the last. His scan time lasted for about 45 minutes total today, and he did AWESOME!! Brian and I are so proud of him, and he's very proud of himself too! He wasn't scared at all. I read him a few books while he was lying on the scan table. He just closed his eyes and listend to me read to him (that was a first, I'm always interupted) After the scan was done, he wanted to go back up to 7 Tower (The Oncology floor) and play with his friends. But, we had to go and yes...he fell fast asleep in the car on the way home.

Jake's counts are doing better, his WBC is 2.5, Hemoglobin is 8, and Platelets are 38,000. His port was de-accessed and he is splish splashing in the tub right now. Jake has another clinic appointment on Friday to follow up about today's scan and for more labs.

I REALLY APPRECIATE YOUR PRAYERS! For the doctors to keep making the right decisions and for Jake's strength and our patience. We are so grateful!That's all for now, I'll update with more news soon.
XO

Friday July 19, 2002
Hello Jake Fans-

Well Jake's platelets were 14,000 so down to the hospital we went. The floor on 7T was slam full, so Jake's transfusion took place in the outpatient chemo center downstairs. As always they are wonderful and they spoil Jake ROTTEN!

Jake's WBC count has JUMPED up to 4.6 (do to the neupogen) anyway my point is that we have a VERY small window where we can do fun things this weekend. So after the transfusion we met Daddy for dinner. It was a real treat! Tomorrow we are taking Jake to the movies. He's so excited!

Doc McMahon stopped Jake's neupogen on Friday, so his white's WILL start dropping soon and he'll be on his own. Monday Nurse Tina is coming to draw labs to keep a close eye on those platelets and white's.

Tuesday Jake is having a bone scan at CMC around 11AM. Please keep him in your thoughts and prayers during this time. He will NOT be having anesthesia for this. We will be practicing how to lay very still all weekend in preperation for this test.
Hope you all have a good weekend...we will!! :o)
XO

Thursday July 18, 2002
******U P D A T E*********
Let this go on record that the final results are in on Jake's CT scan. In record time, in less than 24 hours I have received the news that the tumors are the same in size about 15% of the original finding. MEANING, NOW NEW GROWTH IS GOOD NEWS!

Jacob Aaron will be going to MSKCC for surgery. I still don't have all the details, but I know his Doctors and NP's are working diligently on getting him up there ASAP!! Thank you ALL for praying so hard for Jake. We really appreciate it very much. I'll update soon on any new news...

****More new photos****

Wednesday, July 17, 2002
Hello All-

Jake had his CT scan today and all went well. He was under for about 3 hours total. The contrast takes an hour just to absorb correctly.

We don't have the results, should know something by Friday or Monday. I will update this page with the results as soon as I have them. I know you all are anxious; we are a thousand times over... Brian and I HATE WAITING! Who doesn't? But I cannot stress enough that prayers are needed. Good results are what we want.

Jake had labs today; his ANC is a WHOPPING 48 THAT’S A BIG YIKES!
Labs are as follows:
WBC 1.6
Hemoglobin 10,
Platelets are 25,000.

Nurse Tina is coming tomorrow to draw more labs to check on those platelets. My hunch would be that he’s going to need another transfusion tomorrow??

Thanks for stopping by and checking in, and always saying those prayers!
XO

Monday, July 15, 2002 at 11PM
Hello All-

A VERY long day today... Jake had a clinic check up and his lab results determined he needed both blood & platelets. His counts are as follows...Hemoglobin 7.0, Platelets 7,000, and Whites 300. A WHOLE LOTTA LOW numbers there! Hopefully today's/tonight’s transfusions did some good. He's still on IV GCSF and antibiotics. He is however regaining his appetite praise the lord. It's 11PM and he just ate a hotdog, cold... but hey whatever it takes for him to eat right? YUK! :o)

Jake's going to be having another CT scan on Wednesday the 19th at CMC around 1PM. Please pray for good results, and for our patience with dealing with all this stress and anxiety. We continue to take each day, one day at a time and savior every moment.

Thanks for stopping by and always saying a prayer for Jake.
XO

Wednesday, July 10, 2002
**New Photos**

Hello Jake Fans!

Well, it’s been an exciting couple of weeks for the Courtney’s. Let’s see……where shall I begin????????

Well Jake got his chemo like I said, and the 4th was cruddy…but hey we made the best of it. Friday he was admitted due to fevers and YES FINALLY he was released today! HALLELUJAH!

His counts have BOTTOMED OUT, his WBC was .2 (200) yesterday. He received platelets today (his platelet count was 13,000) and was released after that transfusion.

Jake is now under the care of NURSE MOMMY! :O) He will be receiving his IV Fortaz every eight hrs, and GCSF here at home for the next week or so. He’s also on TPN again. He’s hooked up to the TPN every 12 hrs. Other than that things are good. He was so relieved to be at home, but he already misses his “friends & nurses” at CMC. He met a newly diagnosed boy his same age named Harrison. What a cutie! This morning they played “medical play” in the playroom with all kinds of medical things they both are used to seeing on a regular basis. Harrison has been diagnosed with NB like Jake, he and his family are preparing to go to Duke for a transplant soon. We will keep them and all the rainbow families in our prayers.

Jake will be monitored by our home health care Nurse Tina with blood draws every other day for the next few weeks. Hopefully his appetite will pick up and the TPN will be discontinued soon.

That’s all the news I have for now, I’ll update again soon. Thanks for stopping by and checking in on Jake and thanks for all the prayers!
XO

PS...
A special Thanks to the WONDERFUL Child Life Dept for catering to Jake's EVERY NEED this week! (and the great photos)

Saturday, July 06, 2002
Hello All-

Jake received higher doses of chemo this week. He's doing okay. He keeps spiking fevers so he was admitted to the hospital Friday for antibiotics. His blood cultures are not growing anything thus far, so this is a good thing. Maybe he'll get to come home tomorrow...

He's not eating well, and I'm sure TPN is in his future. His mouth and throat are very sore, due to the chemo. He's felt pretty bad from Thursday evening on. Our 4th celebrations were short lived, but fun. We had a couple of fireworks left over from last year. Jake really loved watching them spark and whistle.

As always, he's a trooper. We know he's starting to feel better because he's getting back to his normal disposition...

Thanks for stopping by and checking in. We appreciate the prayers!
XO

Friday, June 28, 2002
Hello All-

AND CHEMO IT IS...... The soonest MSKCC can get Jake in for surgery would be July 11th. That means that if he had surgery then, he would be about 11 or 12 weeks out from his last chemo, that’s too long for Jake to go WITHOUT it. Not to mention how ever long it took him to recover from the surgery...so he’ll be getting Topotecan & Cytoxin this week.

This should put him recovering from his chemo and ready for surgery around the beginning of August timeframe (WE HOPE). We really appreciate all the thoughts and prayers. Thanks Especially for prayring for the doctors to keep making the right decisions where Jake is concerned.

We are planning an eventful weekend. Jake is planning to go swimming tomorrow YAY! He loves to swim! AND we are meeting his girlfriend Kenna at the movies. We are going to see Lilo & Stitch. Should be fun!! Trust me we are making the MOST out of all Jake’s feeling good time!!!

Have a good weekend, and stay tuned for more updates soon!
XO

Wednesday, June 26, 2002
Okay folks…. Here’s the latest and greatest…

The SKMCC surgeons feel confident they can perform the surgery on Jacob. Now, they aren’t sure that all can be done with just one surgery. There’s talk of two surgeries, though not confirmed yet. This is incredible news for Jake!! We so are relieved that the surgery can be done.

There are a lot of uncertainties right now. The doctors at Sloan want to do this quickly, but might not have an operating room available right now. Doc Kushner is looking into how fast this can be done. IF IT CANNOT be done as quickly as he (Doc Kushner) wants, then Jake will have another 5-day chemo here in Charlotte. After that then Jake would have surgery at Sloan when he had time to recover and his counts were good again. We don’t know all the specifics yet as you can see…. I should have more definitive answers by Friday or Monday. More waiting and wondering on the way, but hey…we are getting there…

Thanks for stopping by and checking in and ESPECIALLY SAYING THOSE PRAYERS!!

Monday June 24th
STILL NO NEWS TO REPORT. Brian and I are trying NOT to consume every thought about this, it is very hard. Please pray for our patience and strength. I promise I will update as soon as I can.

Tuesday, June 18, 2002
Hello All-

Just got off the phone with Doc McMahon. He says that Duke cannot do Jake’s surgery. Apparently the existing tumors are too close to a few major blood vessels. Doc Driscoll is sending Doc Kushner (of Sloan Kettering) the scans today. Per Doc McMahon the surgery will probably by done at Sloan Kettering. I don’t have any other news to report, other than that. When I have a definitive answer or schedule on what’s going on I will update ASAP.

Please pray that this surgery will be able to be preformed. This would be a huge step back for Jake. We need those tumors OUT so he can be eligible for the antibody treatments. If the surgery cannot be preformed, there’s talk of high dose chemo and a stem cell rescue. Brian & I both would rather Jake just have the surgery than to go through the high dose chemo. There’s no guarantee that the high dose chemo will kill the existing tumor, and Jake would still be faced with the unknown…surgery…who knows?

We are hopeful the doctors at Sloan will be able to perform this surgery effectively. We’ve been told that if Sloan can’t do the surgery then it would be humanly impossible. And that Sloan Kettering is very aggressive when it comes to surgery and NB, they’ll do what others won’t. I guess that could be good and or bad. But, what choice do we have? We’ve got to do what they feel is best to get rid of this monster hopefully once and for all. We’ve got a lot of FAITH & HOPE here; we need your help to PRAY PRAY PRAY for Jake’s best interest. While you’re at it, throw in a prayer or two for Mom & Dad’s strength.

Thanks for stopping by and checking in. I’ll update y’all when I have new news.

XO

Saturday, June 15, 2002
Hello All-

Still no word yet, we are trying to take everyday one day at a time. Enjoying being with Jake and him not being sick is wonderful for both of us. BUT we are tormented with what's going on inside our little man. YES WE ARE FRUSTRATED! WAITING IS ONE OF THE HARDEST THINGS TO DO! Anyway, we are trying to make the MOST out of everyday. I'm hopeful the docs will make the right decision where Jake is concerned and this will lead him down the road to recovery and a happy life.

Cute story...we were all sitting at the table eating dinner last night and Jake says "Hey guys, I have a story to tell ya". We turned to listen him rattle off the WHOLE JACK AND THE BEAN STALK STORY! and better yet, the Three Little Bears! Brian and I really enjoyed that! Jake is so smart!!

That's all for now, I'll update as soon as I hear what the plan is. Thanks for stopping by and checking in on us.

XO

Tuesday, June 11, 2002
The PET scan results are back and the tumor that is left in Jake's abdomen area is very much alive. So, I'm sure a surgery will be scheduled soon. Duke is reviewing the CT scans from the 29th of May with a radiation guru Dr. Halprin, to see whether Jake CAN have more radiation to that area or not.

I'll update you all as soon as I know.

Sunday, June 09, 2002
Hello Jake Fans-

Well a fun filled day it was for the Courtney Clan. We ventured out to Tweetsie this morning at the CRACK of dawn. ***NEW PHOTOS**

Had a blast, savored every second of fun and excitement. The weather couldn’t have been more perfect! Jake was so excited to see Thomas and YES he got to ride Thomas, even got a lot of photos with him and Sir Topham Hatt. What a blast!

No word from the docs yet. I’ll post as soon as I know for certain what’s going to happen. Thanks for all the encouragement and prayers they mean so much.

XO

Tuesday June 4th Update
Hello again-
Jake's PET scan went smooth, he did fine and he is resting and relaxing in his room. The doctors at Duke & CMC & Sloan Kettering are still deciding what the best approach is for Jake. Sometime this week Duke is going to be reviewing Jake's CT scans from 4/3 & 5/29 to decide on whether or not to do surgery. When I know for sure, I will post all the details. Again, we appreciate all the prayers and support. We are continuing to pray for the best possible solution for Jake. We have three different doctors who specialize in NB and we are confident they will make the right decision. Thank you all again for stopping by and checking on Jake. I'll post as soon as I have any news.
XO

Friday, May 31, 2002 at 05:15 PM (CDT)
Hello All-

I spoke to Jake's oncologist today and he says that from what they see on the CT scan there’s about 10-15% of Jake’s tumor left. This means the tumors responded well to the therapy. Brian and I are very glad to hear this news, but we felt like Jake’s tumors would respond really well as they did the first time. Jake's bone marrow aspirations came back clear too.

The plan is to go ahead with the PET scan next week and determine what’s alive versus dead tissue. Under the direction from Doctors at Sloan Kettering Doc McMahon is going to speak with Doc Driscoll at Duke and discuss possibly another surgery (AT DUKE THIS TIME) to remove any and all tumor. During this surgery interoperative radiation might be used as well. This is an intense approach and has knocked the wind right out of us, please pray the doctors decide the best approach to kill this cancer for once and for all. Due to the aggressiveness of Jake’s tumor histology the doctors are trying to figure which step is the best for Jake. If surgery is performed, then after he recovers from that Jake will return to CMC for possibly two more rounds of chemo. We don’t have a lot of answers right now; we have been hit with a tremendous amount of stress and anxiety with the possibility of another surgery and more chemo. Please pray that all the doctors make the right choice were Jake is concerned. I promise I’ll try and explain all I can through this page, as any new news comes about.

At home we are anticipating another great weekend with family. Jake is doing wonderfully, and his counts are coming up nicely.

Thank you for stopping by and checking in, and as always for saying those prayers. I’ll update again after I have news about Jake’s PET scan next week.

XO

---- Wednesday SHORT Update ----
Hey Gang-
Okay, Jake's still a little WOOSIE from the anesthesia, but as always he's a trooper. NP Kathy Lamm did a bone marrow aspiration today too. Hopefully Doc McMahon will meet with a pediatric radiologist tomorrow or Friday and we will know how the tumors responded to the two chemo rounds Jake had. Brian and I could hardly contain ourselves today. You'd think we'd be used to it by now, but eveytime it's harder and harder for us emotionally. We realize it's something we HAVE to deal with, but it's terribly difficult to NOT be in control of your child and to watch your child HAVE to be poked, proded, and messed with all the time. This wears on us sometimes obviously more than others....

Jake is relaxin on the couch as I update watching Sponge Bob, content with his cartoons and being finally at home!

I'll update as soon as I have the preliminary results, thanks for stopping by and saying those prayers for ALL THREE OF US!!!!!!!!!!!
XXOO

**Tuesday update**
Hello All-

Well tomorrow morning Jake is due at CMC for his CT, and Bone scan. The CT scan will confirm (somewhat) on how the tumors have responded. We won't have any results tomorrow, maybe by Friday. I promise I will update the page as soon as I know.

We are not as anxious for this CT scan as the next week's PET scan. The PET scan test actually determines live and dead tissue. I'll take what I can get until then, the CT scan is so vauge in so many ways believe it or not.

ANYWAY, I'm asking for everyone who reads this page to keep Jake in your prayers tomorrow, and for Daddy & Mommy to stay sain during this terribly stressful situation, waiting is the hardest part sometimes.

His scan starts at 10AM, he'll go in for his bone scan injection at 9AM and then anesthesia comes to get him to put him to sleep for these tests. Thanks so much for all your thoughts and prayers. We really appreciate them very much.

Jake's still bouncing off all he walls in our house, full of energy, eating and drinking great! He has had a little bone pain in his knees, but that may have something to do with the high white count. Nothing a little tylenol didn't help out. Our weekend was terrific, hope yours was too. Thanks for stopping by....
XO

Friday, May 24, 2002
Hello Jake Fans!

Well Jake only needed blood last night. So, we were home by 10PM. Jake's platelets are recovering on their own YAY!!!.

WBC is 5.6, Platelets were 28,000 at last nights CBC draw up from 20,000 on Wednesday. He's bouncing off every wall in our house. Hopefully we will be able to get outside this weekend and enjoy some beautiful weather! Have a good weekend and Thanks for stopping by.
XO

**Wednesday Update 6PM**
Hello Jake's counts have dropped even a little more. Whites are up to 3.5, Platelets are 20,000 and Hemoglobin is 6.5 YIIIIIKKKKES!! Okay, well Doc McMahon wants Jake to have blood tomorrow, but wants to draw a CBC once we get there to see how much more his platelets have dropped. If they have dropped even more, he'll get platelets too. If not, HOPEFULLY he'll start making them anyday now! So, we will head to CMC tomorrow afternoon for a blood transfusion and possibly some platelets too! That's all for now, I'll update you all again soon. Oh yeah, the I.V. GCSF will continue until Friday. XXOO

Thanks for all the prayers and encouragement! We really appreciate it very much!

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Monday, May 20, 2002
Hello Jakester Fans!

Well, today’s clinic visit was uneventful. Jake had his port re-accessed (yes he screamed his head off I still hear ringing in my ears) He screams until the needle goes in and then he’s like oh…that didn’t hurt. The emla cream numbs it; I think he just is afraid the needle is going to hurt worse than it actually does poor baby.

His counts are WBC 2.5 (yep that’s 2,500 on IV gcsf still till Wednesday I think) His Platelets are 25,000 Pretty LOW, and his Hemoglobin is at 8.0 so, he could go UP or DOWN from here. We are all praying for his little body to start making those platelets and white blood cells. If not, he'll have a transfusion at some point this week.

Nurse Tina is coming out on Wednesday to draw more labs. I’ll post the latest as soon as I get it. I’m just glad his counts aren’t getting AS HAMMERED as the last time. I think a lot had to do with him trying to recover from the surgery too. For the time being, Jake is eating and drinking and playing fantastic and the diarrhea is still here, but hopefully will get better soon.

Before you go, check out the new photos of our little Jedi Knight, his daddy had to get him this HUGE lightsaber. And I mean HUGE, it’s bigger than Jake. He and Brian turn off all the lights and pretend they are fighting with it. It glows bright blue and the thing makes that sound that lightsaber makes, it’s really cool, except for when I get womped on the head with it. At least Jake and Brian have been having a lot of fun with it.

That’s all for now, I’ll update soon thanks for stopping by and checking in on Jake.

XO

Friday, May 18 XXXXXOOOOOOOXXXXXX
Hey Jakester FANS!
Quickly-
Friday's labs were a little lower, WBC are at .2, Platelets are at 56,000 and Hemoglobin is at 8.6. Monday will probably be a long day at clinic getting platelets and blood. Jake's got the big "d" (diharrea) but he's still eating and drinking and pinging off the walls. Today when I came home from work he jumped into my arms and whispered "mommy I love you" and hugged me SO tight, that made my day. Have a nice weekend and I'll update after clinic on Monday.........

***************************************
Tuesday update
***************************************
Hey Jake Fans!

Well Jake had to have platelets, his were at 25,000. His WBC count is at .3 (300) YIKES! and his hemoglobin is at 10.2. We got to the hospital last night and had to wait two hours for them to get HUNG! UGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHH! During which Jake did a little “pole surfing” and socializing. He’s a trip! He has fun wherever he goes.

We finally got home at 10:30PM last night. TIRED TIRED TIRED!!!!!!!!!!!!!!!!!!!!!!!! No Jake wasn’t tired, Mommy & Daddy were though. Jake was pinging off all the walls. He didn’t go to bed until 11:30PM, and woke up this morning at 7AM talking about Never Never land and PIXIE dust! What a QTPATOOTIE!

Nurse Tina is to come out tomorrow for labs & Doc McMahon wants to see Jake on Monday, so I’ll update again soon.

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

Thanks for all the support & prayers!

Monday, May 13, 2002 at 08:23 PM (CDT)
Hey Jake Fans!

Well, he saw Doc McMahon today and his counts have DROPPED! Well, we kind of expected that. His White’s are 700, Platelets are 66K and his Hemoglobin is 10. So, he’ll be getting some platelets and maybe some blood in a day or so. He’s eating and drinking still really well. Jake is on IV GCSF at home and Jake still has a lot of energy and has really enjoys being at home and with his family.

Daddy & me bought Jake an aquarium this weekend, it’s really cute. **See new photos**. Jake loves to look at his 4 new fish and feed them. They are little pigs; we should name them that…the four little pigs! :o)

Mimi came up this weekend to celebrate Mother’s Day and we had a blast, thanks Mimi we love you!

The Townsend Clan stopped by on their way home to Louisiana from vacationing in Tennessee and stayed a few nights, which we really enjoyed. Thanks guys, we miss y’all a lot and love ya’ll very much! Hope to see you guys again real soon!

Nurse Chris called and scheduled his CT, MRI & Bone scan for May 29th & on June the 4th he’ll have the PET scan. I’ll be reminding everyone when the dates approach each scan. Another reminder, nothing will be decided any further about the antibody treatment in N.Y.C. UNTIL Jake’s scans are completed and it is determined the tumors have responded. We REALLY appreciate all the thoughts and prayers. I wish you all knew how deep you touch our hearts.

I’ll update again soon….
XXOO

Friday, May 10, 2002 7PM
Hello Jake fans!

Well the little man finished his 5 day round #2 today. He's still eating and drinking and running around like a little maniac! No change.....His counts are suprisingly good. White's are on the down slide, 1.8, his platelets are 156K and his Hemoglobin is at 12.2 He will start GCSF tomorrow as a boost for his whites.

Well Mimi is here for the weekend, we are so glad for that. Jake asked me this morning "Mommy what does Mimi do?" I said, well she works in an office. At that point he asked "Mommy, is Mimi a super hero?" Isn't that precious? He continues to blow us a way with things he says and does on a daily basis, what a terrific kid! This is going to be a great Mother's Day for me!

HAPPY MOTHER'S DAY!!

XO

I'll update again after Monday's doctor's visit.

Wednesday UPDATE 8PM EST
**Wednesday update**
Hello again, quickly... Jake is tolerating his chemo just fine. Still eating and drinking and YES...at the moment BOUNCING OFF THE WALLS! :o) And not to mention charming as ever with the nurses..

He did a little "pole surfing" in the infusion center today hollering "wha..whoooooo" as he passed all the adults receiving chemo. What a little ham! I think they all enjoyed the entertainment.

He did receive blood today. His labs will be drawn again Friday to see how things are. We anticipate the total destruction of his counts again. He'll be staring GCSF on Saturday at home.

***************************************
**Monday Update**
Hello All-

Jake was able to start his 2nd round of chemo today outpatient in the infusion center at CMC. His counts are really low, and his hemoglobin dropped a lot. He’ll need blood tomorrow or Wednesday. His little body is still trying to recover from the first round and he’s already starting again. PRETTY SCARY! He’ll be finished up on Friday and from there Doc McMahon will schedule another round of scans to see how the tumors responded. No word yet on when that will be scheduled, I’ll update you all as soon as I know????????????????????

The beach was a blast! Jake had so much fun swimming like a little fish. What a BRAVE little man. Well, we all knew that anyway right? The weather didn’t even matter we had a blast! Jake really enjoyed the aquarium and butterfly pavillion **See photos**

I’ll update you all again toward the end of the week and let you all know how Jake’s doing. Thank you all for stopping in and SAYING THOSE PRAYERS! We really appreciate them!

XO

Wednesday, May 01, 2002 at 02:16 PM (CDT)
Hey you Guys-

Well, Jake saw Doc McMahon again today and his counts aren’t high enough to start chemo this Friday like we planned. White’s are at 2.3, Platelets are 49K, and Hemoglobin is 8.9. Not toooooo bad, but not good enough for chemo. So Doc McMahon wants to see Jake on Monday at clinic for more labs and IF by then his platelets are around 75-80K THEN and only then will he be able to start his next 5-day round. By the way, it will be done outpatient. We’ll see…..

Doc McMahon says that if we wanted to go away this weekend, we should. It would be a perfect time to go and Jake’s counts are good enough right now to be without a mask in public. SO, I think we are going to go to the beach for the weekend, just to get away. We need to sink our toes in the sand! YAY! Jake is SOOOOOOO EXCITED ABOUT GOING TO THE BEACH!!!! Rain or shine it doesn’t matter to us as long as we are together having fun!

I’ll update you all after Monday’s clinic visit. Thanks for stopping in and as always, being there for us.
XO

Monday, April 29, 2002 at 03:47 PM (CDT)
Hello Hello Jake FANS! -

Well, let’s start with last Thursday evening. All was grand until I realized there wasn’t any TPN for that night, or dextrose for the GCSF. Yes I panicked, it was 5:30PM, TPN didn’t show up until about 6PM, I had to un pack all the meds, prepare it and OOPS I forgot somewhere in there we were supposed to celebrate Daddy’s birthday! TOTALLY MESSED UP MY/JAKE's SCHEDULE. We finally got settled and Jake sang the sweetest Happy Birthday song to Brian. He’s a doll baby! Well, both of my guys are, I love them SO MUCH!

Jake’s counts on Friday were fair White’s 5.5, Platelets 35K, Hemoglobin was good, (I can’t remember) We all had a good weekend, Jake got a little outside time thanks to Mimi. Mimi came up from GA to help out and spend time with Jake. Thanks MIMI!!!! Well Saturday night I prepared the TPN and went to hook him up and I couldn’t get a blood return RATS! Nurse Tina asked me to pull the Huber and she came out the next morning to re-access Jake. He’s SUPER SENSITIVE, he SCREAMED BLOODY MURDER! Once the needle was back in the blood return was good and we were all breathing a sigh of relief.

Nurse Tina came back out today to draw labs and the counts are on the up and up, Jake’s White’s are 2.2 (down from Friday because I’m not giving him the GCSF anymore) His platelets are 40K today YAY! My baby is making his very own PLATELETS FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SO, Doc McMahon wants to see him on Wednesday. I don’t think his counts are going to be where they need to be for him to start Chemo this Friday. I won’t know until Wednesday when we see the Doc. I’ll update you all after the visit.

Thanks for the continued support and prayers! We really appreciate them very much.
XO
**New photo**

Thursday, April 25, 2002 at 05:03 PM (CDT)
Hello All-

Just a quick update to let you all know that Jake's counts have started to recover! His White's jumped from 500 to 2500 in two days (with the help og GCSF of course). Nurse Tina is coming tomorrow to draw more labs to check all the counts. The IV antibotic has stopped, and tonight is the last dose of GCSF, let's hope those white's hang in there a little. The TPN is a regular now, still every 12 and he's still on the oral Diflucan for 5 more days.

Jake continues to get stronger and stronger everyday. He's BARELY eating anything at all. Today, I came home for lunch and he asked me for some "milk in a big boy cup" so I poured him about 1.oz and gave him a chocolate nilla wafer and he ate it and drank all the milk! YAY! Then after that he said he didn't feel so well, I thought oh no! But he held it down and then laid down for a nap.

When I got home this evening, he seemed to have a little more energy. One day at a time right? Tonight we are celebrating Daddy's birthday. Jake and I have been practicing "happy birthday to you" he sounds so cute when he sings it.

Thanks for stopping by to check in.
We appreciate all the entries and emails full of support and encouragement. I'll update you all again soon.
XO

Monday, April 22, 2002 at 05:20 PM (EST)
Hello All-

Well, Jake had his follow up appointment with Doc McMahon today. Platelets were needed his count was 18K YIKES!!. So, after the exam we were off to a room on 7T for the goods. They were hung around 12PM and finished up around 2PM, but while we were there his dose of FORTAZ (IV antibiotic) was given because it would’ve pushed me behind on my schedule at home. All was finished at 3:30PM YAY! Jake snoozed right through it all, and got pretty irritated with me when it was time to go. And yes, I hit the ground RUNNING for the elevators again!

Nurse Tina is coming out Wednesday morning for labs and we will wait to hear if more Platelets need to be given. If so, I’ll pack up the Jakester and head south. If not, maybe he’ll hold out till Friday. HOPING HOPING HOPING!!!

Jake’s been feeling pretty bad these past couple of days; he’s so tired and has hardly zero energy. He’s not eating, but still gets the TPN every 12 and all the other meds too! He ate a ½ a pickle yesterday, and a few goldfish. He’s drinking a little less than we’d like, but he is drinking. I’m hoping and praying everyday for his strength to recover from this surgery & chemo.

Jake’s WBC was at .5 (that’s 500) today. Normal range is 4-10,000. Hey, he’s up 300 from Friday, that’s a PLUS! GO WHITES GO! His Hemoglobin was at 10.7 so that’s a plus too! The diarrhea is still lingering around. Some days are better than others where that’s concerned.

That’s all the news I have for now. I’ll update again soon. Thanks for all the guestbook entries and emails full of encouragement and prayers. We appreciate them very much.

XO

Friday, April 19, 2002 at 06:45 PM (CDT)
Hey All-

AAAAAAAAAHHHHHHHHHHH……………… Home again, home again YAY! Well, this morning, Doc McMahon said Jake could go home, but first he had to have platelets. So, we waited, and waited, and waited. Apparently the blood bank had run slap out and was waiting on the Red Cross for relief! Well, finally at 1:00PM Jake’s Platelets were hung and they finished around 3PM. We hit the ground RUNNING for the elevators! Jake was so happy to be outside and heading home…ME TOO!

Jake’s Platelets are getting HAMMERED by the chemo, he’s had a rough week getting blood and platelets about every other day, it’s scary but we are hopeful that he will recover and be able to get his second round of chemo in a few weeks. His white’s need to be around 1500 for chemo and he’s struggling with them right now (200 today). He’s a fighter and he will recover and we are all very hopeful that this chemo is doing the trick.

Jake ate about ½ of a cheese dog and a frozen gogurt. It’s the most we’ve seen him eat in almost three weeks. It’s so nice being at home, OUR HOUSE IS SO AWESOME!

Well, Jake’s due IV meds every 8 and TPN every 12, so no rest for the WEARY! I’m still waiting on his meds to arrive tonight. As I write it’s about 7:40PM and they are still not here. Yes, it’s another stressing situation…

Jake’s due at Doc McMahon’s on Monday morning @ 10AM, I’m figuring a whole day of blood and platelets?? Anyway, WE ARE SO GLAD TO BE HOME AND ALL TOGETHER AGAIN!

We had some fun in the hospital this week, Jake (kind of) learned how play the play station games with his buddy Ryan **SEE PHOTOS** and we were invited to Ryan’s LAST CHEMO BASH and we had a lot of fun wishing him and his mom BIG congrats, Ryan is such a sweet kid. Jake talks about him constantly, especially since Ryan gave Jake one of the balloons he got for his party. Thanks Ryan!

Thank you all for all your prayers and encouraging emails and guest book entries, we love reading them!

XO

Thursday, April 18, 2002 at 10:12 AM (CDT)
Hi, this is dad giving the update today. We have been told by the doctor that Jacob can come home on Friday. Chanda will have to administer all of his meds (tpn, two IV meds,Vanc, and fortaz). Jacob will probably need platlets before leaving the hospital. His WBC is up to 200 (normal range is 4000 to 10,00000) and Hemoglobin is at 8. Jacob is in good spirits but tires easily and he still has the green apple splatters. Chanda and Jacob will be glad to get home to get some well needed rest. The house is not the same without them.

Tuesday, April 16, 2002 at 09:20 AM (CDT)
Mornin’ Jake Fans!

Jake got platelets yesterday but they did not take, the Doctor says that it happens sometimes. Jake’s getting blood and platelets today, his counts are still really low. His white counts are around 100, he did not run a fever last night or today, so far and if he continues to not run a fever the Doctor might let them go home soon. Let’s hope so, Chanda is exhausted and I’m sure they both want to get back to some normality!

Unfortunately they can’t have a lot of visitors while his counts are so low, Jake is still not eating and still is on all his antibiotics and wearing a mask.

Will update again soon.

Mimi

Sunday, April 14, 2002 at 10:30 AM (CDT)
Hey All-

Just a quick update to let you all know Jake’s counts continue to DROP! Doc Golembe came in this AM and told Daddy that Jake’s platelets DROPPED to 28, SO he’ll be receiving platelets probably tomorrow, He’s hovering on the boarder line…

Jake’s White count is at 100 still. I hope that GCSF starts working soon; meanwhile we are asking everyone to wash, wash, wash his or her hands!! and I’m cleaning, cleaning, cleaning behind the cleaning people!

Jake has one HORENDOUS diaper rash from all the diarrhea he’s had. Thank the lord for the ointment we received at Duke (that stuff works like a charm every time).

Well, once I got to the hospital yesterday, Jake was feeling quite bad he’d just thrown up some stomach fluid and was kind of green. Nurse Jen gave him some Zofran, and he was feeling back to normal in no time! We walked to the playroom and picked out a few more movies for him to watch last night.

Jake’s still not eating and continues to receive TPN for nourishment. I’m hoping he’ll eat something soon.

Stay tuned for another update soon. Thanks for all the thoughts and prayers, they are so appreciated!
XO

Friday, April 12, 2002 at 8:45PM (EST)
Hey Guys Mom Here-

I’m home tonight; Daddy is at the hospital with Jake. It’s weird being home without my boys…

**Thanks to Jake's Mimi for updating everyone in my absence**

Well, Jake is getting stronger everyday. He’s off the O2 completely and is breathing great! That fluid on his lungs took FOREVER to go AWAY! Gosh, I can’t tell you how many times I’ve had to DRAG him out of bed feeling so bad to get him to walk around. And you’d better believe he’s JUST LIKE ME when it comes to ANYTHING he DOES not want to do! Talk about kicking and screaming! WHEWWEEE, you’d think I was abusing him the way he’s been carrying on and on and on. He fought me so bad yesterday in the hall, he kicked and swung at me, so GUESS what? YUP, he got A BIG OLE TIME OUT right there in front of GOD and everybody! TEMPER TEMPER TEMPER! One day he’ll thank me…(ya think?????????????????????) Hey Mommy’s know best!

Well, truly it has been an EXHAUSTING week, struggling with him and his temper and watching him feel so badly so quick. This past Wednesday was the worst. Jake was so lethargic and weak, the chemo kicked in that day and he wouldn’t even talk to me. I cried all day, it was horrible. TPN started that evening and by morning he was up talking and saying mommy mommy mommy mommy!! MUSIC to my ears!

Jake’s still not eating or drinking, I think the chemo will hopefully have its lasting effects another day or so. Doc McMahon wants to send him home on TPN. Whatever works for me as long as he’s getting what he needs and gets to come home. Doc McMahon started Jake on GCSF (white count booster) on Wednesday night, as you read before Jake’s counts took a dive quick, especially common in one’s who’ve had the treatments like Jake has in the past. Well today his Whites are at 200. YIKES! He’s been wearing a mask for a few days now, it’s so scary!

Since he’s been in the hospital Jake has had so many special visitors. Special thanks to Kenna and her Mom Cindy for making Jake smile and WALK down the hall. Kenna pretended to be a puppy and let Jake walk HER DOWN THE hall, just to get him out of the room. Kenna we love you! *******See photos*************

Well, I’m gonna wrap it up here, I’m so tired and golly gee I just looked over and saw a HUGE STACK of mail I must weed through. UUUUUGGGGGGGGHHHHHHHHHHHHH!! Junk mail is such a waste of time!!!

Thanks SO MUCH for all the thoughts and prayers, every one of you all mean so much to us. We’ll never be able to thank you enough!

XO

Thursday, April 11, 2002 at 07:36 AM (CDT)
Thursday, April 11, 2002

Mornin’ Jake Fans!

Jake is doing much better this morning, his fever is 99.9, and blood cultures came back negative, he still has a bad cough and he’s off the oxygen. The chemo is giving him a lot of diarrhea, and the TPN started last night, so he’s getting all the good stuff. He’s getting platelets this morning his platelet count was 20K, he is considered nutrapnic (meaning all counts are low), so no visitors with sneezing, coughing and absolutely no symptoms of a cold, and please wash you hands when entering his room.

He’ s still not eating and barely drinking anything which I guess is to be expected he weighs about 27lbs. Chanda will try again today to maneuver him down the hall since he’s off the oxygen and he really needs to move! Mask and all, fighting it all the way!

Will update soon……………this is better news!

Mimi

Wednesday, April 10, 2002 at 08:41 AM (CDT)

Good mornin’ Jake fans! It’s Mimi, (Chanda’s Mom). Chanda asked me to update Jake’s web page this morning. Chanda is certainly much, much better at explaining things than I am, but here goes………

With the chemo kicking in, Jake started running a fever last night around 1:00 am and spiked at 102.5! The doctors decided to put him on a 24-hour drip of antibiotics and TPN. TPN is a nutrient. Needless to say they didn’t get much sleep last night. He’s still very sore and doesn’t like getting up and around. It looks like they will be in the hospital for a few more days.

Uncle Josh (my son) sat with Jake last night for a little while so that Brian could take Chanda out to a much needed night out at a restaurant.

I will upon Chanda’s request update the page until they can come home, hopefully it won’t be long!

Thank you again for all your continued support, positive thoughts and prayers.

Mimi

Saturday, April 06, 2002 at 11:30PM (EST)
Hello All-

When I arrived at the hospital this morning, Jake was in great spirits. He was RARING to got to the PLAYROOM! So, for the FIRST time since Tuesday morning Jake walked on his own. He was a little shaky at first, but nevertheless our brave little hero! Of course he didn't go willingly, he fought us tooth and nail all the way down the hall. Brian and I infront and behind Jake demanding more! more! more! and Poppy and Grama behind us all crying! It wa a sight for sore eyes I tell ya. A few nurses were cheering Jake on too! It was a sight, BOY WAS HE MAD AT US! But, once he saw the wagon he knew he could ride from then on. We played in the playroom for a long while. While playing, Jake received his 2nd day of cyclophosphamide & topotecan. Still seems to be tolerating them both well. Praise god!Jake did walk a long way back to the room. I think each day he's getting stronger and stronger.

We finished playing in the playroom, just in time for a few friends to stop by and visit. Thank you guys! we appreciate you all visiting.

Jake's still using O2, I'm hoping the moving around helps. I'm not sure when Jake will be able to come home, he has to be breathing better than he is now. Daddy's at the hospital again tonight, so he'll see Doc McMahon first thing and he will advise us, I'll update you all as soon as I know something.

Poppy and Grama are leaving in the AM. It sure has been good having them here with us. We all have enjoyed their company, especially Jacob Aaron, he told Poppy he'd come to his house and and they'd go fishing. Jake said "Poppy, I'll catch a little fish and you can catch a BIG fish" How cute is that?

All our family and friends are a wonderful support for us, no matter how near or far! We are so very blessed.

Update you all again soon.

Friday, April 05, 2002 at 11:25 PM (EST)
**SATURDAY MORNING UPDATE AT THE BOTTOM OF THE PAGE**
Hello everyone Mom here-

Thanks to Jake's Grama's (Mimi & Grama Cindy) for keeping you all updated for me, I thought they did quite well. It's been great having our family here.

Jake had a better day today. The NG tube, epidural, Foley (urinary catheter) and two perhiperal I'V's all came out today! Jake is still O2 dependant, so hopefully that will be gone once we get him up and around. Jake is still pretty weak, and in alot of pain. He's getting toredol & morphine when needed. He's appetite is SLOWLY coming around. This evening he ate a few little bites of a PB&J and jello. Still not really drinking anything hardly, but you know he's being pumped with lots of fluids.

Jake's chemo started today around 12PM. He received both without any problems. I was relieved and very anxious for the treatments to begin. Jake is scheduled for 4 more days of chemo. Hopefully each day he will be getting around a little easier.

Tonight I'm home getting some sleep, Daddy releived me. He has been so anxious to see Jake, it's been hard on Brian not being able to be right there with Jake for everything. Hopefully they will have a good night and get to spend some quality time with each other in the morning. Jake and I are so lucky to have him in our lives, we have so many things to be thankful for.

We really appreciate what a strong support of family and friends we have. Your words and prayers mean so much.

No word yet on when Jake might spring the joint, I'll update as soon as I know something.

XO

**UPDATE SATURDAY MORNING***
I spoke with Brian this morning, he says that Doc McMahon says Jake has some fluid on his lungs. Doc McMahon is going to decrease the IV fluid and see if Jake will drink more and wants us to have him up and out of the room as often as possible. So, we are going to be in and out today getting him around. I'm hoping to have him walking around some today. Nurse Carol and I had him out in the playroom yesterday afternoon, but Jake was mad at us cause he has to wear the O2 tube in his nose. So, he was less than cooperative. Can you blame him?? Jake came around after a little while after he found out he could play with some playdoh. YAY yucky messy playdoh did the trick!

That's all for now, I'll update later or Grama Cindy will update later this evening.

Thursday, April 04, 2002 at 06:10 PM (CST)
Hello Jake fans it's Grama again. Jacob had another tuff day, he is in alot of pain still. Lastnight they had to put in a GI-tube,thru his nose into his stomach, it was distended from the dye they used on his scans and with the tube it will drain out. Tomorrow they will start the chemo and get on the road to another remission. We appreciate all the prayers,and love you all send so much. Always greatful the Courtney's

Thursday, April 04, 2002 at 06:53 AM (CST)
Hi everyone This is Grama from Oklahoma. Yesterday Jacob had another day of intense testing. They put him to sleep again for a Bonescan and a CTscan so he spent most of the day there, he is in alot of pain from the surgery and very mad at everyone because he wants some tea . Today they are going to let him rest and get ready to start chemo tomorrow. Chanda is so good with him , and Brian is helping all he can. What a family of troopers. Please remember these kids in your prayers , we are so thankful for the support of so many wonderful people. Grama and Poppy

Tuesday, April 02, 2002 at 04:53 PM (CST)

Tuesday, April 2, 2002

Hi all,

It’s Mimi and Grama, just wanted to let you know that Jake’s surgery went well, the doctor was only able to do a biopsy. He was still sleeping when we left the hospital this afternoon around 3:00pm, Chanda called at 6:00pm to let us know he was still sleeping and is in a lot of pain. They gave him an epidural to help let’s hope it works!

Grama, Poppy and Mimi and Doris and Jonathan’s parents were there to support Chanda and Brian through this very difficult time. We thank you for all your support.

We are so thankful for all your prayers and support please keep Jake in your prayers and thoughts.

Thursday, March 28, 2002 at 04:04 PM (CST)
Hello Friends, Jake Fans –

The Camp Care event was fun but Jake only lasted about ½ around the rink and then he was done. Brian and I did really good. I was kind of dreading the fall, but I never did. I have ½ the Rainbow group as my witness. I think all us parents are pretty brave for getting out there anyway. WHEW talk about treacherous! If you weren’t balancing yourself, you were DODGING the little ZOOMING (gold medallists) kids or tripping on the chopped ice! Beside that it was REAL fun I tell ya. What was I crazy for thinking I could hold on to a camera, take pictures and Ice skate? Apparently I was (but that’s beside the point)… sorry no photos of this event yet, I’m sure someone caught some of my gracefulness on the ice though….

Well Jake’s surgery will not be changed. The final decision is April 2nd. So, Jake’s supposed to be at CMC on Tuesday morning between 8 & 8:30AM. My (favorite) in-laws are flying out from Oklahoma on 4/1, and my Mom will be driving up from Atlanta this weekend to celebrate Easter with Jake. She will stay until the 3rd or 4th. We are so grateful to have them all to lean on. They are wonderful support for us right now.

These past few months watching Jake recover, thinking he was well on his way to being healed have been wonderful. Brian and I look at him in awe everyday. There’s not a day that goes by that we don’t hug and kiss each other and tell each other that we love each other. Family ((HUGS))) are big at our house. We have had so much fun trying to get back to normal, and are realizing that this is a setback…. (hopefully minor) I’m so thankful he’s done this well…this far. I’ve met so many that have lost so quickly, it’s so heartbreaking. We continue to be thankful for everyday we have and pray for those still in treatment, relapsing and for those families who’s loved ones have lost this battle.

My next update will be after Jake’s surgery as soon as I have a chance. A lot of people have been asking how they can help. Well, I’m asking everyone to stop and say a prayer for Jake whenever you think about him and SPECIFICALLY at 10:00AM on Tuesday 4/2. Please help me and my family send all kinds (short, long, under your breath or OUT LOUD!! it does not matter he will hear them) of powerful prayers up to the ULITMATE HEALER! I’ve got ALL my Faith and trust in God, and the doctors that are helping us get Jake well. I’m going to pray the surgery goes well, they will be able to get that tumor out of his abdomen and he recovers quickly. I’m also going to pray the chemo he receives won’t make him sick and does what the doctors want it to do!

My heart is always full of HOPE.

Thursday, March 21, 2002 at 05:08 PM (CST)
Hello All-

Well, things at home are still the same. Very nerve wracking! We are getting through each day as best we can. We get up every morning with a hope and prayer to make it through. We are anxiously awaiting Jake’s surgery date, getting closer and closer. Still no change there, scheduled for April 2nd.

We met Doctor McMahon today and he advised at that time that Jake would be started on chemo on the 3rd, while recovering from surgery. Jake should be in the hospital 5 days. We discussed the whole Hickman vs. infusa-port issue and have decided that an infusa-port will be placed. We had NOTHING but trouble with Jake’s other Hickman’s, and I felt more comfortable with the port idea myself. Actually I demanded it, and was called a pain… (What’s different from any other day)… but that’s beside the point!

Jake’s been having a lot of diarrhea, caused by the neuroblastoma Doc says. Still though, his appetite is great and energy level is wonderful. We are getting ready for the Ice-skating (Camp Care) event on Saturday; I’ll take my camera and hopefully get lot’s of good shots. I can’t wait to see Jake on skates. I’m not ready for all the falls I’ll take, but we should have fun. It will be nice to get our minds off of things that make us crazy and have some fun for a while.

I want to thank everyone for the encouraging thoughts and prayers. We really appreciate them. I’ll update again soon..

Have a good weekend, XO
**Check out the new photos before you go**

Thursday, March 14, 2002 at 07:40 PM (EST)
Hello All-

Jake's much better, the urinary catheter caused him to be in severe pain for a few days, but Nurse Chris called him in some good pain medicine that really helped. It was horrible to watch him scream and double over in pain whenever he would try to pee pee.

I FINALLY heard from Doc Morton’s office (the surgeon) Jake’s surgery has been scheduled for Tuesday April 2nd, 2002 at CMC. The time around 10AM, we are to be there at 8AM they said. They tried to get Jake in ASAP, but the hospital had conflicts with Doc Morton’s schedule, SO…. we will have to WAIT and MAYBE HOPEFULLY someone will cancel and Jake can take the time slot. But, until that happens, surgery will be done on 4/2/02. Doctor Morton is supposed to call me on Monday and confirm what exactly will transpire during the surgery. I'll update you all on that conversation next week.

Jake is doing well, running, jumping and PLAYING his little heart OUT! HE LOVES his new “at home” sitter Heather, he calls her “my Heather”, and it’s really cute. He’s so good for her, if I come home for lunch to eat and spend time with him, he grows little horns and a pointy little tail…. and the cutest little smile you’ve ever seen… go figure! But, for her he’s an angel :o)

Things at home are still pretty rough; we struggle everyday with this reality of Jake’s relapse. Our whole family feels so helpless, angry, sad, fearful, and FULL of anxiety the unknown just rips our hearts to shreds.

All we know is we are going to do EVERYTHING we possibly can for Jake. Sometimes I wonder how much more can HE take? I know he’s young and resilient, but he’s already been through the RINGER!

Well, I must put the little man into the tub now; he’s hollering MOMMY LET’S GO! HURRY UP! GET OFF THE COMPUTER, I WANT TO PLAY IN THE BUBBLES!

I’ll update you all soon, thanks so much for stopping by and saying a prayer…
XO

Monday, March 11, 2002 at 02:13 PM (CST)
First of all we want to thank you ALL for the loving and thoughtful encouraging words you've left on the guest book, and in emails. I can't tell you what it means to us to know so many care so much.

Jake had his PET scan this morning; we were there at 8:30AM just like we were supposed to be. They finally put him under around 10:30AM. After they inserted the Foley (urinary catheter) and peripheral IV for the anesthesia the test was over in about an hour, he was released from recovery around 2PM.

Brian and I have every mixed emotion you can fathom. We are hopeful Dr. McMahon consults with Dr. Morton (surgeon) to determine when and exactly where to the biopsy. Dr. McMahon does NOT want any feet to Drag, and stated that he'd like Jake to have the biopsy this week. Now whether that CAN be scheduled this week we don't know yet.

When the biopsy is scheduled Dr. Morton will place a port or Hickman again at that time. Dr. McMahon said Jake would be getting topotecan and clophosphamide chemotherapies. The schedule (right now)consists of two 5-day rounds. The first beginning sometime this month. The next three weeks after the first. After the second round Jake will be scanned again to determine whether he's in remission or not, and if any additional radiation is needed. If so, the radiation will be preformed at Duke, under Dr. Halpren again.

If he is considered to be in remission, Dr. McMahon wants Jake to go to Sloan/Kettering in NY for antibody treatments. I don't know how many or for how long. I only know both Dr. Driscoll and Dr. McMahon want Jake to have this treatment. We want WHATEVER WILL WORK TO SAVE JAKE! I first learned of this anti-body treatment while following little Jon Powell. He was diagnosed with NB and had a transplant in Jan of 2002 and straight from that he went to Sloan Kettering for this treatment. When I learned Jake relapsed and after Dr. McMahon mentioned the antibody treatments to us, I emailed Jon’s mom Melissa for help. Melissa reminded me of one VERY important thing. We as parents are our children’s BEST advocates. Thank you Melissa

Melissa immediately put me in contact with Dr. Kushner in NY at Sloan Kettering, I called him and left word for him to call me back and he did very quickly. Dr. Kushner and I discussed Jake’s history in brief, and he advised that if Jake were to get into remission again, he’d be a fine candidate for the antibody treatment. I’ll update you all more on that when we get to that point.

On a lighter note, we took off to the beach on Friday. The weather was beautiful all weekend and trust me we didn't want to come home. Jake learned to swim (with his water wings on) and was jumping off the side of the pool into my arms. What a sight! I can't tell you all how happy it made us to see him having so much fun. We visited Alligator adventure and the aquarium; Jake seemed to really enjoy himself especially on the beach. He loved watching all the children playing and running and jumping around in the water and sand.

**We had Jake’s photos made last week; we knew he’d be losing his hair again soon so…before you go, check them out. **

I'll update again soon, thank you so much for continuing to keep Jake in your prayers!
XO

Tuesday, March 05, 2002 at 02:46 PM (CST)
Our worst fears have been confirmed today. To make a long story short, Jake has relapsed. He has two new growths. One in his abdomen, and the other in his chest. Brian and I don’t have a lot of answers right now from his doctors, but when we do we will update you all. Our family is devastated and we would greatly appreciate everyone lifting Jacob up to the LORD in prayer anytime you think of him.

Jake’s scheduled for a PET scan this coming Monday the 11th at CMC. The PET scan can show the difference between live and dead tissue. After that confirmation, Doc McMahon will schedule a biopsy at some point. We will advise as soon as we know something.

Please keep Jake in your prayers…

Monday, February 25, 2002 at 05:09 PM (CST)
Hello Jake Fans!

Well, we met today with Doc McMahon (HEY DOC YOU ROCK!), Jake’s Bone Scan and Bone Marrow aspiration were ALL CLEAR! YAY! His CT results will have to be re-done because he moved and they just want to be sure, SO…. he will have ANOTHER CT scan on the 11th of March at 8:45AM. **I'll keep you all posted**

Jake’s been doing really well; he’s feeling much better and running ALL OVER THE PLACE BOUNCING OFF THE WALLS! Brian and I took him to see Return to Neverland last Saturday at the movies, what a treat! Jake just LOVES to go to the movies with Mommy & Daddy! He laughed and laughed and had such a good time. Not to mention what a popcorn HOG! Brian and I couldn’t get the bag away from him! HAHA After the movie he ran all over the movie theater and pretended to be Peter Pan flying around and around. It was so precious!

We’ve decided to keep Jake out of a group daycare environment for a few months, he’s got to stay well for a while, and we’re hoping he can return by this fall. We’re HOPEFUL as always! Right now he’s staying with a friend of ours that kept him when he was an infant, and hopefully we will be having another friend’s daughter come to the house and watch him a few days a week. Praise the lord we’ve got wonderful friends who continue to come through for us! Thank you all very much!

**Don’t forget to check out the new bath-tub-do and that smile before you go**

As always thank you all for checking in on us and saying those awesome prayers and encouraging words that keep us GOING!

XXOO
I’ll update again soon!

Saturday February 16, 2002 9:51 AM CST
Jake was released from CMC this morning, YAY !! Jake's home finally after 6 days of being in the hospital. He's really glad to be back in HIS room with HIS TOYS! The infection settled in his line, so the port had to GO! This was the same infection he had in January. He's feeling much better and running crazy here already, bet you can't imagine that huh?

The CT & Bone scan were done on Wednesday and the port removal went well on Friday morning, and he also had his bone marrow aspiration then too.

Doc McMahon wants to see Jake mid-week to discuss the results, hopefully he will have all the results for us by then.

Jake's been given amoxicillan to take for an additional 7 days at home. Now with the port out, Brian and I are relieved because if he does get a fever in the future, there's no MAD DASH to get him in the hospital for IV antibiotics, he will still see the DOC, but it's less frantic. So, we are really relieved. As for MA & PA, we are terribly exhausted, but very glad to have our boy home again. We are going to try and have a relaxing weekend at HOME!

Jake's a trooper, and we couldn't be more PROUD, he's come so far! Well. I'll update you all when I have more news.. Take care and keep Jake in your prayers for GOOD TESTS RESULTS!
Thanks
XO

***See new photo***
Jake was selected for the poster child for the Iron Man contest this year. This contest is providing money for the "House of Hope" Pediatric Bone Marrow Unit House, similar to the Ronald McDonald house, but specifically for the Pediatric Bone Marrow Patients at DUKE. Pretty neat huh?

Wednesday February 13, 2002 8:43 PM CST
Mom here again-

Jake's scans (CT & Bone Scan) were moved up to today since he was already in the hospital. His Port is being removed on Friday and his Bone Marrow aspiration will be done then too. Today was REALLY ROUGH! He was not allowed to have anything to eat after 9AM or Drink after 12PM. He did not understand why, and it was pure torture for him. They didn't take him back until 5:15PM this afternoon. I wanted to hurt someone! I wish there were special circumstances for little ones getting scans done EARLY! He got out of recovery around 8:30PM and was a ball of cuteness bouncing all around when we got back up on the floor to his room.

Jake's doing much better and they started him on rocephin again yesterday to kill that nasty bug he grew in that culture.

So far, we've got to see a few of our friends, Kenna & her mom Cindy on Monday and Ryan & his mom Wendy last night. Today Ryan stopped by for a game of cards. Hey Ryan, thanks for playing cards with me today, it was fun!

When I left him tonight, he was munching on a big "ham samich " his daddy got him. What a QTPATOOTIE! Looks like he'll be getting out of the hospital on Saturday sometime. After the port has been removed, he has to receive 24 more hours of rocephin.

Gotta run, I'll keep ya updated. Thanks for stopping by and checking in.

Monday February 11, 2002 7:02 PM CST
Mom here-
Jake's seems to be feeling better, still running warm. His blood cultures came back positive, SO, he'll be in the hospital for another day or so. He's receiving "vanc" & some other antibiotic (I can't ever remember the name of). His chest xray and urine tests came back fine. Doc McMahon is advising us to remove him from daycare until summertime. Looks like mom will be pulling the night shift at work for a while, gotta do whatcha gotta do!. I'm beat, the night duty at the hospital was brutal last night. Someone was in the room every hour on the hour. Jake slept fine, as he always does. Keep our little one in your thoughts and prayers. We'll keep ya posted.

Sunday February 10, 2002 7:31 PM CST
Hey, this is dad here. Jake has been admitted back into CMC. He is running a fever and they want to run some tests. We will know tomorrow how long he will have to stay. Will keep you posted.

Saturday February 2, 2002 7:20 AM CST
HELLO HELLO HELLO JAKE FANS!

Hope all is well with you all, things are GREAT at our house! Jake is feeling much better and was able to return to daycare last Monday. He had a great week back at school after being out almost two weeks. He seems to be really enjoying it.

Jake is on his very LAST round of ACCUTANE (retinoic acid) he completes that treatment on February 5th. Yes we will probably have a PARTY! Now, if Doc will just let me ax the septra that would be nice. I think we are in negotiations HAHAHAHA!

Potty training is still going really well, and he’s even telling us pretty regularly when he’s got to GO! Jake gets to go to Chuck E. Cheese again today for his friend Seth’s Birthday, should be quite an adventure I should say. Brian tried to get out of going….but HA! He’s not that clever! Just kidding.

Jake is scheduled for his 9 month POST TRANSPLANT scan on February 18th, here in Charlotte at CMC. We are glad it’s being done here. He will have sedation for the CT, Bone Scan injection/scan, and a Bone Marrow aspiration. We won’t see Doc McMahon until the Friday following that with all the results. So, I’ll keep y’all posted.

Other than that, we are getting back into a pretty normal routine. SLOWLY but surely we are getting there FINALLY! PRAISE THE LORD!

Thanks again for stopping by and checking in on us, we sure do appreciate all the loving thoughts and PRAYERS up to GOD for our little guy. He’s our angel, and we are SO BLESSED!

XOXOX

Tuesday January 22, 2002 2:49 PM CST
Hey there...Hi there...Ho there Jake FANS!

Well, Jake is recovering nicely from his battle with the crud of evil! He is of course BOUNCING OFF THE WALLS! You didn't expect anything less did you?

Daddy took Jake to see the Doc yesterday morning. Jake had to had his port re-accessed, can't stay accessed more than 5 days at a time. EMLA cream is still our BEST FRIEND! WOW Modern medicine ROCKS!

Okay, well Jake is still on the IV Rocephin, once a day until Friday then he's done. YAY! We'll go see Doc McMahon again and have CBC's drawn and try to get back into the "normal" routine once again. Whatever that is........................

Jake's still eager to potty on the BIG POTTY! He's a trooper! His favorite part is the flushing! I think he would stand there all day if he had something to flush...what little kid wouldn't? Jake should be able to return to daycare next week, lord willing. I'm just praying he's strong enough to fight those evil kid cruds this time!

My Mom, Jake's "Mimi" came up for a visit last weekend, we had a blast. Jake really loves his Mimi! Thanks Mom, it was a treat! ** see photos **

It's lots of excitement and fun here at the Courtney Casa I tell ya! Thanks for stopping by and checking in, we appreciate all your wonderful support through thick & thin!
XO

Thursday January 17, 2002 4:37 PM CST
YAY we are home!

Jake gave us a scare, but no worries now! He's on the road to recovery!

Jake was released today from CMC around 4PM. He did have a negative blood culture this time around, so that's GOOD NEWS! Doc McMahon started him on Rocephin today, he'll be on this IV med for atleast another 7 days. He's as cool as a cucumber, you should've seen it... he was tearing up the halls at CMC today. Two days in the hospital is enough for that boy. All our favorite nurses were there of course and Jake ate them right UP!

Kenna and her Mom Cindy came by for a visit today. Jake just LOVES Kenna! Thanks guys, it was a treat! and Kenna looks GREAT!

Jake has to go back to see Doc McMahon on Monday morning, so I'll update as soon as I can....

Thanks for all the prayers and for stopping by. I'm going to crash hard now....
XO

Wednesday January 16, 2002 7:14 AM
***ANOTHER UPDATE***
Brian called me this morning to report that Doc McMahon came in and stated that one of Jake's blood cultures stared to GROW something NASTY. This means that Jake will be in the hospital until at least Saturday morning, and will be on an IV antibiotic for 10 days from home. Little man is going to be out of commission for another week, but hopefully we can care for him at home just fine starting Saturday. That's all I have for now. Keep the prayers GOING!!
XXOO
Hey y'all-

Jake's was running a fever of 103 last night when I got to the hospital. Daddy spent the night, and today we are switching off. Jake's eating & drinking fine, just burning UP with fever. Doc McMahon seems to think it's a nasty cold/crud that's going around. They are pumping him with LOTS of High powered antibiotics and hope to release him on Thursday morning. I'm headed to the hospital around lunch to releive Daddy for him to work. Thanks for stopping by and say a prayer for our boy to get better QUICK!
Thanks so much!
XO

January 15, 2002 EST
****UPDATE******

Jake was admitted to CMC today, due to running a fever of 101.4 last night. Doc McMahon wants to keep him in the hospital for a day or two to run a few tests. Daddy is with him now, and I'm headed that way in a bit. I'll update as soon as I know what's going on.

HHHHHEEEEEELLLLLLLLLLLOOOOOOOOOO JAKE FANS!

WHEW! Jake’s getting bigger and bigger everyday. So Mommy & Daddy had to buy him a BIG BOY BED! ******SEE PHOTOS******* Yep, he’s GROWING like a little WEED! He seems to really like the bigger bedroom and bunk beds. He had a bad dream the first night, so I just crawled in beside him, MAN O’ MAN was it better than trying to SQUEEZE into that toddler bed! It was so COMFY!

Jake’s doing really well with potty training, today at the daycare he told his teacher he had to go poop! And he went on the potty like a BIG BOY! I told him how proud I was of him and all he keeps saying is “Mommy are you SOOOOOOOO proud of me? I answer OF COURSE! You are AWESOME!

Jake got more interactive pc games/software for his birthday; he’s AWESOME on the computer. Everyday he comes home from school he HAS TO PLAY ON THE COMPUTER!

He's eating really well and gaining weight slowly but surely! I'm anxious to see his weight at next weeks clinic visit. Jake goes back to Doc McMahon for his 3-week labs on January 21st. I’ll update you all then. Thanks for stopping by.
XO

Wednesday, January 09, 2002 at 07:12 PM (CST)
Hello Jake Fans-
Here’s another quick update:

FINALLY SPOKE WITH SOMEONE AT DUKE AND ALL TESTS CAME BACK FINE!!!!!!!!!!!!! YYYYYIIIIIIPPPPPPPEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! HHALLEEUUUJJJAAAHHHH!!!!!!!!!!!!!!!!!!!

Doc McMahon wanted to make sure all levels were fine, so we went back to clinic this morning and Jake saw Nurse Chris. She drew labs and we were outta there. Got to see Ashley and Rena Abernathy, Ashley looks GREAT! And is almost done with her outpatient CHEMO! Praise GOD!!!!!!!!!!!!!!!!!!!!!

Here’s the scoop:
WBC’ are 6.5!! HHHHIIIPP HHHHIIIIPPPPPP HHHHHHHHHHOOOOOOORRRRRAAAAYYYYYYY!!
Hemoglobin is 12.2
Platelets are 125K
ANC is AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!

Jake’s 9 month POST-Transplant scans have been scheduled for Monday February 18th. These tests will be done at CMC this time around. I’ll keep ya posted on that…Jake’s still sailing right along on potty training. He’s made #1 & 2 in the potty YYYYAAAAAAAYYYYYYY!!! What a champ! I'll update again when I have more news to share. Thanks for stopping by!

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXXOXOOXOXOXOXOXOXXO
Please remember little Johnell Newman; he needs lots & lots of HEALING PRAYERS

Sunday, January 06, 2002 at 06:49 PM (CST)
HEY ALL YOU JAKE FANS!

Saturday’s party was WILD! There must have been 1500 Billion kids at Chuck E. Cheese. Pure KAOS I tell ya! Jake had 4 kids show up out of eight invited. All the better on my pocket book, ya know what I mean?? We had a scare, Jake decided in the middle of a photo “opp” to bolt and run into the crowd where no one could see him. I screamed across a VERY CROWDED CHUCK E.CHEESE “Jake’s DISAPPEARED!” Me, Brian, my brother and several of the other mothers started the hunt. I sprinted toward the entrance, and there was no Jakester. I happened to catch a glimpse of Brian kneeling down across the room. I ran over there and Jake was getting the reprimand. I guess Jake felt this MAJOR compulsion to ride the Bob the Builder ride. It scared the living daylights out of EVERYONE! It turned out to be a terrific party and we enjoyed it! ***SEE PHOTOS**

Well, Jakes due back at clinic a little early due to his platelets being low, apparently Doc McMahon wants another CBC done just to make sure nothing funky is going on. Otherwise Jake is doing great! He’s been potty training for four days now. So far so good! Jake’s really been excited being back at school, he wakes up bright and cheerful in the morning’s singing “I’m going to school…I’m going to school”

I’ll update again after next weeks clinic visit. Hopefully we will have heard definitive results from December’s Duke tests. I’ll keep ya posted.

Stay tuned…

XOXOXOOXXOXOXOOXOXOOXOXOXO
Special healing prayers for our little rainbow buddy Johnell Newman, he’s been admitted to CMC for pneumonia.
XOXOXOXOXOXOXOXOXOXOXOXOXO

Monday, December 31, 2001 at 02:29 PM (CST)
**NEW BIRTHDAY PICTURES**

Jake's first day back at Daycare was AWESOME, Mom's first day back to work was too. This afternoon, Brian and I watched Jake outside his classroom having fun for a few minutes before letting him see us. It was such a sight to see him laughing and playing with all his little friends. Stay tuned for more Birthday pictures this weekend!
XO

HAPPY NEW YEAR!!!

Hello Hello Hello Jake Fans!

Well, we all made it safe and sound back on the ground in good old NC! Wow we had fun! Brian and I agreed this was the best Christmas yet! I believe Santa brought Jake EVERYTHING AND MORE!! Let’s put it this way…I shipped a box back to the Courtney casa weighing 53lbs!

The first few days out were fairly mild, but each day got more and MORE COLD! When we left Oklahoma yesterday morning it was 16 degrees outside BBBBBRRRRRRRRR! Just to get back to North Carolina to be just as cold….

Well, the trip was very eventful; Jake got to see every single one of his cousins on Brian’s side except Madison & Hunter from Hawaii (don’t worry guys; we are planning a trip your way soon), and Eric & Sierra in Florida. Grama & Poppy had a house FULL! We really did enjoy seeing everyone.

Jake saw Doc McMahon today…LOOKING GOOD!
Whites 4.6!
Plates 95K
Hemo 11.6
ANC 1794

WHHHEWWEEEEEE GO WHITES GO!!!!!!!!!!!!!!!!!!!!!

Doc McMahon was as usual his cheerful self, cutting up with Jake and picking on Kathy Lamm. Still haven’t heard ZILCH from DUKE, so Doc McMahon is on the case doing a little investigation as to why we haven’t heard any news from the 5th & 6th test. As soon as I know anything I will update the page. We are hoping NO NEWS is GOOD NEWS!

**Jake goes back to DAYCARE on Wednesday the 2nd! Brian and I are SO excited we can hardly sit still. It’s a very special day for Jake; it’s also his 3rd Birthday. We are having a small family party here at the house and then the daycare is celebrating with him and then this weekend it’s the BIG PARTY AT CHUCK E. CHEESE!!!!! Jake is SO excited about his party!

I go back to work on the 2nd. I can’t hardly believe how wonderfully supportive my employer has been. Our family and friends have bent over backwards so many times to help up through this past year also. Jake has done so well with everything, what a blessing. Brian and I are really looking forward to this New Year with a lot of hope and thankfulness. We are so lucky to have Jake in our lives.

**CHECK OUT THE NEW PHOTOS**
Happy New Year to everyone!
XO

Tuesday, December 18, 2001 at 02:14 PM (CST)
Hello Jacob FANS!

Well, Jake and I arrived SAFE & SOUND here in OKLAHOMA on Saturday the 15th. Both flights out were eventful. The first flight out was slam packed with LOTS & LOTS of LITTLE kids and we were all on the BACK of the plane! YAY! It was a lot of fun. This one little kid even threw up all over his mom & dad, and they set one isle over from us, so we had perfect view of the whole episode!

Jake kept saying, “Momma…is that kid okay”? I’d say, yes baby, he’s just not used to riding on a plane. ANYWAY, the little kid was much better once on the ground. The sad part about it was that Jake and I probably attributed to his airsickness. This little kid’s name was Nathaniel. He and Jake played together for an hour before we got on the flight. Well, Jake had to have his goldfish crackers…and so did Nathaniel. So, guess what came back up all over his mom & dad. I apologized to them and they laughed and said oh well, at least the crackers kept him occupied before the flight!

Also, on that same flight it’s kind of ironic. But, I met a nice lady who had breast cancer. She was going home to Mississippi from Raleigh were she is going to start pheresis at the end of January. She was telling me about her stem cell transplant and radiation that’s on the horizon. I told her Jake’s story of his stem cell transplant and radiation, wished her lots and lots of luck and told her she’d be in our prayers. It’s a small world huh?

Well, Jake got to ride on Poppy’s tractor this morning! What a sight to see those two driving all over this wonderful property out here. Jake is having SO much fun and so am I! We helped put the tree together and wrap presents. We’ve visited Grama Betty (Brian’s Mom) and Great Grama Warseat. So far, it’s been really fun! Tonight we are having dinner with both Brian’s sisters and Grama Betty & Great Grama Warseat and all the kids. It should be a lot of fun.

Daddy comes out on Saturday we can hardly wait. We talk to him everyday and Jake tells him to come see him! The weather has been beautiful the past few days; today it’s supposed to be in the 60’s.

No results yet from DUKE. I emailed the doc’s yesterday and asked them to fill me in ASAP. I can hardly stand waiting. It’s grueling!

Well, that’s all for now, I’ll update again as soon as I know SOMETHING!
XXOO

Monday, December 10, 2001 at 09:45 AM (CST)
Hello Jacob FANS!

** New PHOTOS **

Jake’s tests went pretty good this go around. NO word yet on any results…. but as always, we’re hoping for the BEST! NP Tracy Kelly will contact me ASAP. I will update you all as soon as I know; she said it’d take a week or two to know everything so we are trying to be patient.

Well, the Courtney’s hit the road once again! Yep….we headed to Charleston to meet Aunt Jamie (my only sister) and Uncle Aaron, Brody & Grama Kim! We had So much fun! I picked up a case of the CRUD! And lost my voice…. ha ha yes…I’m sure Brian is loving every MINUTE of my silence. No, he’s been a great interpreter!

Saturday we headed for downtown Charleston, gosh it sure is pretty down there. The weather was warm and humid. We shopped through the markets, and ate lunch at TBONZ it was great! That night, we went to the festival of lights, the boys had their picture taken with Santa and we shopped some more. The light displays were beautiful and the boys seemed to love it! Brody sure has gotten big, and he’s starting to communicate very well. I was so glad to finally see him and spend some time with my family.

Sunday I cried when we were leaving, SORRY girls! I couldn’t control it. I miss you guys terribly am so glad to get to see y’all again! We are so glad you all are moving back to Charleston next year from Jacksonville! I can’t wait!!

Well, all was good on the way back until Jake got a horrendous NOSE BLEED! I had fallen asleep, and Brian glanced back at Jake and about had a wreck trying to wake me, and pull over fast enough! We couldn’t get it to stop for a while. Each Accutane dose seems to bring on different side effects. Last month his skin peeled like he had sunburn, the palms of his hands would peel and peel and peel! This month it seems to be nose bleeds. Thanks goodness he stops tomorrow night and had two weeks off. The worse effects seem to occur toward the end of the cycles. After about twenty minutes he was fine.

Jake and I are headed out to Oklahoma on Friday night. Daddy will follow the next week. I look forward to HOPEFULLY seeing some SERIOUS SNOW and spending the holidays with our wonderful family. The Courtney’s will be back in town on the 29th. Just in time to start the Happy Birthday celebrations for the Jakester! WOWEEEE Look out Chuck E. Cheese!!!

Jake have had the best time enjoying the outdoors, seeing friends and family and most of all Brian and I have thoroughly enjoyed watching Jake being a little kid again! We are so blessed and grateful to have those in our lives that care so much about us. During the holiday season and everyday in our hearts we carry the memory of the brave children and adults we’ve met along the way with cancer who are no longer with us today. We pray their family can heal more and more each day Our prayers are also with our friends STILL FIGHTING cancer. We will never stop thinking about you and praying for your remission! From our hearts to yours....we hope everyone has a happy holiday season.

Monday, December 03, 2001 at 08:40 AM (CST)
Hello Jake FANS!

Grama Brenda & Grampa Dan came up from GA to visit this weekend. We had a blast! On Saturday, Momma, Grama Brenda & Daddy took Jake to see his very first EVER theater movie. We saw Monsters Inc, what an adorable movie. Jake was a little scared at first because we had entered the theater after the previews started showing, so we are looking for four seats in a row in the DARK! Anyway, as blind as I am in the dark especially, I spotted four in a row RIGHT IN THE MIDDLE OF EVERYONE! Oh well, they moved for us to get by and sit down. Jake was GLUED to the movie; it really kept his attention the entire time. After it was over, he wanted to watch it again! Looks like theater going we be a family event from now on YYYIPPPPEEE!!

Grama Brenda & Grampa Dan left early on Sunday morning, Thank you guys for a wonderful weekend. We really enjoyed your visit!

Sunday afternoon, The Courtney Clan headed down to Charlotte. Camp Care had put together. Of course there was The Charlotte Hornet’s mascot, Santa, and horse rides, and the Charlotte Mecklenburg Police Dept. was there with their motorcycles, and cruiser and their ROBOT! Jake REALLY liked that robot. The whole day was great, Thank you Camp Care!

**There are new photos posted enjoy! **

Well, Jake and I are headed up to Durham tomorrow night for Jake’s 6 Month post transplant scans. Wednesday A.M. all the tests start. Pft’s (pulmonary tests) Echocardiogram of his heart, and of course clinic YIPPEEEEEE! (I am happy to get to see the nurses and hopefully others I haven’t seen in a long time) Daddy will come up Wednesday night. Thursday things don’t get started until 12P.M. Bone scan injection, 1P.M. General Anesthesia for CT, 2P.M. Bone Scan, 2:45P.M. Bone Marrow Aspiration. So, Jake will have a long day. Please keep him in your thoughts and prayers during this time. He’s been such a trooper with everything he’s had to endure. Brian and I are so thankful he’s come this far and is doing so well. Praise God for giving us so much!

Thanks again for stopping by and checking in, I’ll update after the Duke tests.
XO

Thursday, November 29, 2001 at 12:17 PM (CST)
Hello Jake FANS!

Well, I hope everyone had a HAPPY TURKEY DAY! We sure did. The Courtney's spent Thanksgiving in Brick, NEW JERSEY it was AWESOME! Auntie Pat's WHOLE family is up there and they are all wonderful people! I've never seen SO much GOOD food!! Pat's sisters can really cook good. We all really enjoyed ourselves. It's so funny how hey call pasta sauce GRAVY...But oh my goodness can Pat's sister can make the gravy and meatballs! We all were in hog heaven!!!

Jake saw Doc McMahon today, it's been awhile...almost three weeks since the last visit. The visits are getting farther and farther apart. Jake's blood work came back pretty good. His WBC are 3.6, Hemaglobin is 11.3, platelets are 153K and his ANC level equals about 1,296. He's still looking pretty good! Doc McMahon doesn't want to see him again until the 31st. Sounds good to us!

We are headed back up to DUKE next Tuesday night for tests on Wed & Thursday. It's already time for the 6 month post transplant tests!! WOW time sure flies. Jake will do all the pulminary tests and blood work on Wednesday and sedation/scans and bone marrow aspiration will be done on Thursday, and after that we'll be headed home.

I'm hoping we will have the results of all tests before we leave for Oklahoma on the 15th. Yep, Momma & Jake are on the road again! Daddy is meeting us out there on the 22nd, and we will all be back on the 29th.

Jake's excited about SANTA and Christmas. He started back on the ACCUTANE (retinoic acid) this week and will be on it for two weeks. Other than that, he's eating and playing and growing!!

I have posted new photos of our precious child first thing in the AM. WE HAVE BED HEAD NOW!!! YYYYYIIIIIIPPPPPPPPEEEEEEEEE!!!!!

I'll update you all again on the Duke trip as soon as I can. Until then, thanks for stopping by and checking in on us.
XO

Wednesday, November 14, 2001 at 03:34 PM (CST)
HELLO JAKE FANS!!!

**NEW PHOTOS**CHECK THEM OUT**

Well here's a QUICK update.....We made it to Colorado in ONE PEICE!! The flight was good from NC to PA, but going from PA to CO we had an hour WAIT while already boarded on the plane. YEP...they got us ALL on the plane and then decided to tell us that there was a major computer malfunction, and a computer needed to be replaced that controlled flight function....HMMMMMM YEP....to say the least I WANTED OFF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The Captain would update us all about every 20 minutes, after an hour the computer was replaced and we were off to COLORADO! Might I add that the Jakester was the sweetest kid any MOM could ever ask for during this trecherous adventure! The flight was a little bumpy at first and then it evened out around 36,000 feet YIKKEESS!! Anyway, Jake was already fast asleep. He slept most of the trip on the first flight too!

Well, nothing exciting to report except the family dog (Lady "G") the chocolate lab, ate Jake's antibotic medicine. I MEAN THE DOG ATE JUST ABOUT THE WHOLE BOTTLE AND LEFT NOT A TRACE OF THE MEDICINE. I woke up this morning to a tattered, shredded plastic bottle all over the floor. I of course checked on the dog who was licking her chops....Then I was told of her behavior and now know to keep things out of HER REACH!

Colorado IS GORGEOUS! Jake and I have been on our own until today, that's when Grama Cindy and Aunt Margaret get here. We are anxiously awaiting their arrival. Jake is having fun with his three older cousins Lexy, Lynley & Austin and cries when they have to leave to go to school in the mornings.

We both are relaxing and enjoying the beautiful weather and company of family. We miss Daddy terribly and can't wait to see him next week. When Jake speaks to Brian on the phone he tells him "Daddy I'm sad..." I know it breaks Brian's heart. Jake sure does miss his Daddy!

I'll try to update again if I get a chance...Thanks for stopping by and checking in and enjoy the new pictures!

XO

Thursday, November 08, 2001 at 09:00 PM (CST)
Hello JAKE FANS!

Well here's a quick update for ya:

Jake has discovered how to undress himself. Today in clinic he didn't want to put his shirt back on after lab draws. I had to bribe him to put the shirt back ON!

ANYWAY, once we got home, he decided to take his pants off, and socks...I don't get it..I'm freezin to death and he's shedding his clothes...GO FIGURE! That's an ALMOST THREE YEAR OLD FOR YA! (WOW I can't believe that either...Thank you GOD!)

Jake saw Doc McMahon today. Everything's on the up & up...

WBC 4.1 (YAY It's ABOUT TIME!!)
HBG 12.5
PLT 156K

HIP HIP HUURRAAYYYY! Jake is on his way! This is the highest his counts have been since the transplant! WOOOOOOOWWWEEEEEEEE!!

Jake's back on his two week cycle of retinoic acid (ACCUTANE) He takes the pills like a champ! The effects of the drug are very drying, it seems to have sort-of evened out. The last two cycles he's shown effects after coming off the medicine. His lips peel severely and his cheeks stay beet red. His skin is VERY FLAKY and sensitive. He knows those pills are helping him, he's never given us any trouble about taking them. PRAISE GOD!

Well, Jake and I are off to Colorado for a week to visit relatives. If I get a chance I'll update ya from there...

Thanks for stopping by and checking in on Jake. We appreciate your thougths and prayers a BUNCH!
XO

Monday, November 05, 2001 at 05:13 PM (CST)
WHOOOOOAAAAAA DISNEY ROCKED!!!!!!!!!!!!

Well, let's start with Saturday morning. The limo arrived at 8:30AM SHARP, just like Make a WISH said! Jake kept saying WOW look at that BIG CAR!! We got all the bags in and my neighbor shot the video of us packing the limo and climbing in. Sorry no photos yet. We never even used the digital camera, what a drag! ANYWAY, then we were OFF to the airport. Upon arriving to Charlotte Douglas, Mr. Wishmaker himself "tot" was there to greet us. Jake was in a ROTTEN LITTLE KID MODE. He was so spun up about riding in an airplane, he was running all over the place acting like a normal little almost 3 year old....

Anyway, we got bumped to first class because the flight was slammed packed. YAY!! Everything was cool until....Jake starts hollering "The plane's gonna CRASH MOMMA...The plane's gonna crash!!! I had to start giving him candy to keep him quiet! That was the wrong thing to do cause that just made him even more wired!

Got to Orlando fine, Grama Cindy & Poppy were there to greet us coming off the plane. A Give the kids the world rep was there waiting on us. She took us right to get our luggage and off to get our mini-van. These folks treated us like ROYALTY! It's UNBELIEVABLE! Got to the Give the kids village and we were all stunned by how nice it was. This place has it's own movie theatre, ice cream from 7AM-9PM. The villa was beautiful!

Sunday, Seaworld was AWESOME! my sister met us down there, we haven't seen her since the day Jake was diagnosed (11-2-00) I can't believe it's already been a year. It was so good seeing her, my nephew Brody & her husband Aaron. We had a blast together and I miss her very much!

Anyway, Monday morning the character brakfast was the COOLEST! I'll have pictures later this week, then we were off to the Magic Kingdom. From dawn till dusk we burned the daylight off by riding everything and seeing everything!

Tuesday was a drag, Epcot stinks..Well, the living sea was cool, but I don't see what the big deal is about Epcot. Not kid friendly at all. Tuesday night Mayor Clayton (a big grey bunny)came by to tuck Jake in at bedtime. Jake was beside himself! He didn't want The Mayor to leave. I got more pics of that. I promise!! I promise to update the site with some pics ASAP!

Wednesday we hung out at Animal Kingdom. This place ROCKED! It was so AWESOME! The Safari ride was way cool!!All the animals were all out, we got to see everything. Grama Cindy & Poppy were right there with us, heck it took four of us just to keep up with Jake!Brian actually ran into an old high school friend from Oklahoma. It's a small world after all....

Thursday we dropped Grama & Poppy off at the airport and hit Universal Studios for the day, it was Awesome. I tell you The Make a Wish foundation and Give Kids the WORLD ARE INCREDIBLE! We are forever grateful! We had a blast, and will never forget it. Jake was entertained every second of the day! Thursday night coming home, Jake fell asleep on the airplane, and didn't wake up until we got into the limo on the way home. This little kid was WORE SLAP OUT!

Okay, now it only took me 5 days to re-coupe from that vacation....My feet STILL HURT! But trust me, it was all worth it just to see the look on Jake's face. It was priceless!

**Had to take Jake to see Doc McMahon Friday morning, Jake picked up the CRUD. Runny nose, diharrea.... Doc says it should pass in about 5-7 days He's a little better today..

Thanks for stopping by and checking in...
XO

Wednesday, October 24, 2001 at 01:20 PM (CDT)
**NEW PHOTOS**

HAPPY HALLOWEEEEENNNNN JAKE FANS!

One last update before we head to Disney World. I took these photos this afternoon and had to leave you with them. He's a MONSTER I TELL YA. All I have to do for Halloween is give him a cupcake and that takes care of the costume!

Enjoy! Talk to you post Disney! Hope everyone has a safe and Happy Halloween!
XO

Monday, October 22, 2001 at 08:03 AM (CDT)
Good Morning all-

Our friend Jonathan passed away last Thursday afternoon. Jonathan had a long battle with Osteosarcoma. He faced that battle with such courage and determination. He leaves behind so many friends and family members who cared so much about him.

The funeral service was yesterday in Spencer. Several of us got up and spoke about what an impact Jonathan had on all of our lives. I spoke, and let everyone know how I felt Jonathan lead me closer to God in so many ways. When I saw Jonathan last Wednesday night, I let him know too. I'm so glad I had a chance to actually tell Jonathan how I felt from my heart when I said goodbye. He and his family have been so good to my family. In all Jonathan's pain and struggle he never forgot about Jake, and would always ask about him and say a prayer for him. He asked others to pray for him as well. Jonathan was one of the most intelligent, and funniest peope I've ever met. I will miss him deeply. If you would like to know more about him, go to www.baldjon.com.

**Jake news**
Jake is eagerly anticipating MICKEY! he is already packing his suitcase with all his favorite toys. Of course, he doesn't understand that the suitcase is for clothes not toys!! We are preparing to leave on Saturday morning. Grma & Poppy are meeting us down in Orlando. We should have a wonderful time. Doc McMahon's visit last week was eventful as always, Cheryl the nurse mase Jake a crown and we colored it and he walked around the clinic telling everyone "Hi! I'm King Jacob" where does he get that wonderful personality? When Doc McMahon cam in, he climed up in his lap and made himself comfy while he checked him out. Jake has has a few moles pop up out of NO WHERE all of the sudden, he is keeping a close eye on them. Other than that, the CBC' go like this:
WBC 3.7
HGB 12.5
Plates 135K
Looking pretty good!

Well, Doc McMahon wants to see Jake this friday morning before we go to Disney, so I guess my next update will be once we've gotten back on 11/1/01. So I'll update as soon as I can!

Take care, and thanks for stopping by and checking in as always.
XO

Wednesday, October 17, 2001 at 08:41 AM (CDT)
Hello Jake Fans!

Just a quick update about Granny Lou's visit. Having a great time, enjoying her company.

****
I have taken a few photos this morning I thought you all would enjoy.
****

By the way, Granny Lou sure can make some excellent banana pudding! LORDY!! Sure is good! The cheese biscuts are a treat too!!

Jake goes back to Doc McMahon on the 19th. Also, there is going to be a Relay for Life Walk a-thon to raise money for cancer research. The walk is in honor of Jonathan Gross my co-workwer diagnosed with Osteosarcoma and Jacob this Friday night at Bessimer City High school in Gastonia. We are planning on attending the festivities and are very appreciative and touched.

Thank you all who are walking in honor of these two very special people in our lives. I'll take photos and update you all next week.

Thanks again for stopping by and checking in. The prayers are very appreciated as well
XO

Sunday, October 14, 2001 at 04:20 PM (CDT)
Hello Jake FANS!

Well here's the Thomas update:

Weather... REALLY WET! YUP....we got pretty soaked!

For the most part we had fun! There was plenty of FOOD, MUSIC and the THOMAS VENDORS were making a KILLIN! WHEEWWWWWWEEEEEEEE! Jake got a nice new Thomas suitcase and rain jacket. Convenient they were selling them....

Granny Lou was right there along with us having fun fun fun! Sorry no pictures....it was too wet, and I didn't want to chance getting any of my camera wet! I'll update the photos soon.

The Train ride was okay, there were SO MANY people there we were on the last car and there were 6 cars being pulled. Jake had fun, and cried when we had to leave. Mostly the crying was due to his being WORE SLAP OUT! All in all we had a good day and enjoyed very much being together and finally having son good ole FUN!

That's all for now, take care and thanks for stopping by!
XO

Friday, October 12, 2001 at 12:08 PM (CDT)
Happy FRIDAY JAKE FANS!

Well another clinic visit down without a hitch. Jake's ANC is ALOT LOWER this time, who knows...I'm not going to panic..
WBC 3.5
HGB 11.6
PLT 109K
ANC=980

Well, we were LATE LATE LATE getting into clinic this morning. Jake's appointment was at 9:30A as we were headed out to go Jake holler's MOMA I GO POOP! Well, needless to say, it was a false alarm. He thought it was pretty funny! I DID NOT!

ANYWAY, Little stinker...we get to CMC and the "P" parking lot is FULL. This meant we had to seek a parking spot in the deck. Well, we ended up on the top. We get in the elevators and stop on the 3rd floor and this man and this woman get in. After the doors close, Jake decides he's gonna push the "alarm" button, which only rings a bell. Well, all of the sudden, this guy is YELLING AT MY SON! WHOAA NELLY!.....Well, I'm going to put it nicely.... I told him to LIGHTEN UP, JAKE WAS JUST A KID! Well, the guy stood there like I was crazy for defending my child and when the doors opened he STORMED OFF! The lady that was on the elevator with us, told me some people are not kid friendly, and maybe he was having a bad day. I said well he might have thought he was having a bad day until he ran into me and I made it worse! We laughed!

Okay, on to more eventful news...Once arriving on the floor, we ran into The Children's Miracle Network and Lite 102.9, they asked if they could interview me about Jake. Children's Miracle Network is raising money for CMC. They have joined with Lite 102.9 for a radio-A-THON yesterday and today. So, as we are running to clinic I give a very winded...panting interview about Jake's history and progress. Jake gets the MICROPHONE so, stay tuned to Lite 102.9 this weekend if you get the chance. I think they are going to air it this weekend. I hope anyway...

Jake's due back in clinic next Friday, my hopes and prayers are that his counts RISE ON UP! Those White's are procrastinating little boogers!

That's all for now, Thanks for stopping by to get updated. We appreciate all the encouragement and prayers along the way; they sure do make our day brighter!
XO

Wednesday, October 10, 2001 at 08:55 AM (CDT)
Hey Guys!

Just wanted to let you know Jake is SO EXCITED about seeing Thomas the tank engine in Spencer this weekend. He also is a fanatic about Halloween! Everywhere we go he wants to see the HALLOWEEN(S) he calls it..Jake is still eating very well and taking his accutane (retinoic acid) like a champ!

We are headed to GA this Friday to pick up my Grama (Jake's Great Grama) Granny LOU! She will be here for a week or more?? Can't wait for the time together. We haven't seen her since Jake's diagnosis this time last year! WOW how time flies!

Jake's got another clinic appointment Friday morning, I'll update again if I get the chance. If not...stay tuned for more exciting news about the JAKESTER!

HERE HE COMES TO SAVE THE DAY!!! Wait...was that Mighty Mouse or Superman?? ANYWAY...I've updated the photos, check out the caped crusaider in his new PJ'S!! What a QT PATOOOOTIE!!! **Notice the new hair growth** It's coming in SLOWLY but SURLEY!

TO EVERYONE who ordered a t-shirt or sweat shirt for our support group. Thank YOU ALL SO MUCH We really appreciate it and if anyone else who is reading this is interested in the purchase of a t-shirt or sweatshirt, please check out the www.rainbowchildren.homestead.com website and look at the t-shirt link for more info.

Thank you all for stopping by and checking in on Jake, he is a true blessing to Brian and me.
XO

Friday, October 05, 2001 at 01:07 PM (CDT)
Hey Jake fans!

Clinic Update: Today's labs still looking pretty good!
WBC 4.0
HGB 11.2
PLT 135K
ANC 1480

Jake is doing great with his port, he dosen't even flench when the needle is inserted thanks to the emla cream. This is going to work great!

Disney news:
Our trip has been confirmed we are leaving the 27th - the 1st YYYYAAAAAAAYYY!!!!!!. Jake can't wait to trick or treat with Mickey! Jake's going to be Thomas the Tank engine for Halloween so he'll be TOOT TOOTING right along with the rest of the characters! Speaking of Thomas, Jake will see him in Spencer, NC on the 14th. We are headed out for a day with Thomas! Trust me he is counting down the days!

We are expected back at clinic next friday, Jake wouldn't give us a urine sample today in clinic. I sat there for over an hour and tried all kinds of bribes, Nurse Chris did too. They wanted to do the HVAC test which shows signs of Neuroblastoma. So, I guess we will try it again next week. By the way this test is the test I'd like to see mandated all over the U.S.!

All in all Jake is eating great, taking his retinoic acid (accutane) like a champ, and becoming the most wonderful ALMOST 3 year old! That's right 3 YEARS OLD! He'll be 3 on 1/2/2002 WHHHHHOOOOWWWWWOOOOOOO!!! We are planning a BIG party, more details to follow. That's all for now. I'll update next week. Thanks for stopping by and checking in and saying a prayer!
XO

**Check out the new photos**

Wednesday, September 26, 2001 at 12:43 PM (CDT)
HALLELUJAH! NO NEUROBLASTOMA CELLS IN EITHER TEST, HERE OR CALIFORNIA! YIIIIIPPPPPPPPEEEEEEEEEEEEEEEEE!!!!!!!!

Can I just say WHEWWEEE! What a relief! Brian and I feel like a HUGE weight has been lifted. I was really dreading today's clinic visit. We have both been a wad of nerves.

Well, Jake's port was accessed today for the 1st time! He was a champ. I put the emla cream (numbing medicine) on his chest about an hour and a half before clinic and it seemed to do the trick.

Like always just kinda sat there and ate his goldfish and chilled out. Of course Nurse Chris did an excellent job of accessing the port. YAY CHRIS! Thank you! Todd (TOT Jakes says) was there to play with Jake, Thanks Todd for being there with us today and helping lasso Jake around for me.

Doc McMahon came in and said that the test from Charlotte was back and it showed clean, but that the test from California hadn't come back yet. Well, before I could get out of the exam room to leave, Doc McMahon came back in and handed me the California results which showed clean too! Hallelujah! After that I was floating on clouds 7, 8 & 9!!

WBC 4.9 (GO WHITE'S GO!!!!)
Hemaglobin 11.1
Platelets 120K

Kathy Lamm made the mistake of giving Jake a water gun, so then Doc McMahon, Kathy Lamm and Kim Barker all got wet knees and hinney's. I believe Kathy Lamm actually held Jake up and told him to aim straight for Doc McMahon's head. My boy's a good shot apparently because Doc McMahon was wet headed! We all were celebrating the news and laughing and running around the clinic dodging Jake's tiny little water gun! Thanks guys for celebrating with us!

Tracy Kelly (NP) from Duke emailed me and has scheduled his 6 month post-transplant tests for December 6th. So, The next time we have to be there is 12/6!

We've been in public a little more these past two weeks. Our Cancer support group met at Carowinds on Saturday. Jake had a blast in the kiddie park. We didn't do anything else, just let him enjoy himself. After that we met Auntie Pat in Tega Cay at The Sherwood's house. The Sherwoods's took us out for a boat ride and dinner at T-bones on Lake Wylie. What a treat! What wonderful friends we have. Sunday we went on a Yacht ride sponsored by Camp Care and lunch was provided by Max & Erma's What a treat!!! We absolutley had a wonderful weekend. It was so nice to be together as a family and have some fun for a change. We are truly blessed and very grateful!

That's all for now, thank you all for the thoughts and prayers we really are so grateful we have all of you who check in and say a prayer.
XO

Thursday, September 20, 2001 at 01:43 PM (CDT)
HIP HIP HOOORRAAYY THE HICKMAN WAS REMOVED TODAY!

Hello Jake fans!

Just a quick note to let you all know Jake did really good this morning. He was taken back to start the surgery at 9AM this morning, well...he didn't want to wake up after all the sleepy stuff was given to him. So, at about 12PM he started coming around asking for Momma!

The Hickman is gone and the port has been placed. After he awoke I asked him to look down and see that his catheter was gone. Jake said "Momma...where my lines"? I said they are gone!! gone!! gone!! YAY!

All in all Jake seems a little groggy but is doing good. We left the hospital around 1:30PM and headed home. Jake is happy right now eating popcorn and watching cartoons with his Poppy.

The Bone Marrow aspiration was done, and there will be two tests done. One pathology will be done here, and one in California. We should know something later next week. I'll post the news as soon as I know..

Thank you all for keeping Jake in your thoughts and prayers today and always. We really appreciate it alot!
XO

Wednesday, September 19, 2001 at 03:40 PM (CDT)
Hello again Jake fans!

Well, I have to tell you all about the busy week we've had so far....

Monday Jake, Poppy and I went to the Asheboro Zoo! We had a BLAST! What a beautiful day and there wasn't hardly anyone there. We enjoyed every exhibit and took our time. Jake really enjoyed himself, he especially like the chimpanze exhibit. There was one old chimp interacting with several of the little kids, it was WAY COOL! I absorbed every minute of the day, how wonderful it was being with Jake outside enjoying the exhibits and taking in the much needed fresh air.

Today we took Jake to the NC transportation museum. Jake is a TRAIN NUT, so it was the perfect place for him. This is also where Thomas the Tank engine is coming in October, you can bet we are going to be there too. Anyway, Jake really enjoyed the trains and the train ride at the end of the tour of the museum.

Jake's scheduled for the surgery and bone marrow aspiration tomorrow at 9AM. Please keep him in your thoughts and prayers!

I'll update you all again soon!

XO

Sunday, September 16, 2001 at 03:17 PM (CDT)
Hello Jacob Aaron Fans!

Well, Jake's hair grew A LOT more this week since Poppy drove in from Oklahoma, I had to update to post new photos. It's outta control I tell ya!

Jake's enjoying Poppy all to himself, and being a typical two and a HALF year old. The Retinoic Acid treatment is really affecting Jake's skin, eyes and lips. It's very drying. So, we are keeping a close eye on his fluid intake and are looking forward to a two week break off the medicine.

Jake's Bone Marrow aspiration and port placement is still scheduled for Thursday September 20. Please remember him in your thoughts and prayers. Brian and I are an anxious ball of nerves for the most part. We find ourselves constantly thinking about those two cells that were found. It's not the fact that there are two cells, it's the fact that there were never any there before. I just keep praying ang hoping for the best where Jake is concerned.

Thank you all for checking in on us and keeping us in your thoughts and prayers.

XO

**
Don't forget to check out the new photos**

Monday, September 10, 2001 at 01:03 PM (CDT)
Dear Heavenly Father,
We are moved by the alarming news and crisis that our country is facing. This, the greatest nation, founded in the belief that "In God We Trust" & the "Land of the Free". Please have mercy on those suffering, hurting and in fear, and give wisdom & strength to those who are assisting. May the forces of evil be broken by your power and may we humble before thee, our strength and refuge.

Give wisdom to all our Presidents & our leaders and bring your comforting peace through the power of your Holy Spirit. Help us here to reach to those that have been affected by this tragedy.
In the name of our Lord and Savior, Christ Jesus. AMEN

*****UPDATE September 11,2001
The Gold Ribbon Days Rally Washington, DC trip has been cancelled due to the terroristic attacks today. I was supposed to leave on Wednesday at 10:30AM. I'm So thankful I didn't plan to go a day early. My thoughts and prayers are with the victims and their families. God Bless America!

**Update from Septemeber 10**
Hello Jacob Fans!

Momma here to bring you more exciting news. Well Poppy arrived safe and sound yesterday afternoon. All the way from OKLAHOMA! WHEWEE what a drive! After Jake settled down from the initial Poppy excitement, I decided I needed to flush his lines. Well, the red one flushed fine...on to the white one when all of the sudden I felt a liquid dripping down my hand. YIKES!!! Jake's central line had torn just above the cap end. Talk about flipping out, I did just a little. I clamped the line and called Doc McMahon's office. Well, NP Kathy Lamm called me back and asked me to wash it with betadine and seal it up in a tegaderm and come in the AM for a repair. Well, hear I am thinking they are going to seal the tear NOPE. They CUT his catheter off about 3" out of his chest and stuck a new set of lines on it like it was NOTHING! What a trip! I think that freaked me out even more than the tear. ALL the while, Jake's calmly watching Thomas the Tank Engine. Two and a half hours later we were done. Both lines flushed and drew back blood YAY! Now 10 more days and it's gonna be replaced!
What a morning!

While we were at clinic Doc McMahon came in and spoke with me about the Bone Marrow tests. Apparently the Duke team and CMC’s team is unsure of what 2 Neuroblastoma cells out of a million mean. . He understood my concern over the NBL (Neuroblastoma) cells in the test. He said that there would be no way to tell if it's bad or good unless another test was performed and showed a higher number of NBL cells. Doc McMahon said that a cause for concern should be if there were more cells found, he advised that these cells that were found could be dormant NBL cells and that could be all. He believes the Retinoic Acid will do the trick. However, he is going to perform another bone marrow aspiration on 9/20 the day Jake is having his port placed. HOPEFULLY we will see NO Neuroblastoma cells in those results.

Please keep Jake in your thoughts and prayers September 20th…

**Remember, September is National Childhood Cancer Awareness MONTH. Please wear your goldribbon pin in support of childhood cancer awareness. You can get a free gold pin sent to you online at:
http://www.childhoodcancerawareness.org/goldribbon.asp

XOXO

Thursday, September 06, 2001 at 03:45 PM (CDT)
Hello all you Jacob Fans!

Well, all the results are in...Here's the scoop:

The CT scan showed a perfectly clear scan! The tumor fragments that showed from the March CT scan are NOT THERE ANYMORE!!

The Bone Scan showed a perfectly clear scan!

The Bone Marrow aspirations showed two different things. One test was done in the lab at Duke and showed NORMAL BONE MARROW. The test they shipped off to California showed 2 Neuroblastoma cells out of a MILLION cells. Two out of a million is so insignificant that the Pediatric Bone Marrow Unit Team doesn't even know what that means. Our family is trying NOT to panic, we are going to HOPE that the retinoic acid treatment Jake is on does WHAT IT'S SUPPOSED TO DO! Jake's next series of tests will be in November. We will hopefully see those 2 Neuroblastoma cells got to ZERO Neuroblastoma cells!

Jake's immune system is getting stronger, he is allowed now in public enclosed places without a mask, if there is a LOW crowd. If there is a large crowd, they have advised that he wear a mask. I think he's so used to it now, he knows when he needs a mask or not. He even tells people who come to visit that they need to go wash their hands. What a terrific kid Brian and I have.

Jacob's port placement surgery is scheduled for September the 20th. This is a minor surgery, but as always prayers are greatly appreciated. Brian and I are excited about Jake being able to go swimming, and even SPLISH SPLASHING in the bath tub like he used to before the cancer. I'm hoping he will like having that "garden hose" (as Doc McMahon puts it) gone out of his chest!

Jacob's Poppy John is coming from OKLAHOMA to visit for a few weeks. Jake constantly runs to the door looking for him, ("where my Poppy Momma?") it will be a treat to have him here for a visit.

That's all the news I have for now, I'll update again soon. Please remember we appreciate all the friendship and support everyone has shown us, it means so much to our family.
XO

Wednesday, September 05, 2001 at 01:51 PM (CDT)
Hello Jake FANS!

OKAY, still no word from DUKE on ANY of the tests results. Yes, I am chomping at the bit! WAITING IS THE HARDEST PART! But, like it was put to me today by none other than "Dan the Man" No news is good news right? UUUGGHHHHHHHH!

Jake saw Doc McMahon and Kathy Lamm today in clinic. As always, those two crack me up!I spoke with Doc McMahon about the port placement, he said he'd schedule it with the surgeon's whenever we had decided for sure. Well, we decided for sure, and I should be hearing from Doc Morton in the next week or so. I'll keep you posted on that surgery date.

Jakes counts are holding steady.

WBC 4.2
Hemoglobin 11.8
Platelets 126,000

GO JAKE GO! Still wish the WHITES would get the move on, but all in due time I guess. The Wishmaker Todd (Tot is what Jake calls him) met us in clinic today, thanks for playing with Jake or better yet, helping me chase him down the halls!

Jake looks great and wait till you see the hair on this kid! What a sight! Brian and I can almost run our fingers through it. I think Jake’s gets irritated with our hands in his hair all the time, but WE CAN'T HELP IT! We have NEVER seen him with this much hair! I try to make his hair stick up with shampoo when he's in the bath, but he usually tells me to STOP MOMMA! Like I said, I can't help it...I have to get it on camera!

The Retinoic Acid treatment started today. Doc Driscoll wants Jake to take this medicine for 6 months (until February). Retinoic Acid was given (in Jake's case) to fight relapse. The retinoic acid seeks out any Neuroblastoma cells and kills them. I'm not saying there are ANY to kill, but if there WERE ANY, it seeks and DESTROYS THEM! It's precautionary, and is usually given the first six months after a transplant.

Taking the pill, (for Jake) I thought was going to be a nightmare. But, to my surprise, he took them without any problems! He looked at me after he took them kinda like, what's the big deal mom?

WOW, what a day! Well, that's all I know for now. I'll update you all as soon as I know ANYTHING!

Thanks for keeping Jake in your thoughts and prayers!

***SEE NEW PHOTO***

Thursday, August 30, 2001 at 06:16 PM (CDT)
Hello Jacob Fans!

Well, Jake's first leg of his test are complete! Jake did great! Wednesday he was scheduled for an echocardiogram, and they wanted to sedate him! I put a stop to that QUICK! I told them that Jake had one before transplant and there was no sedation involved. I assured them he would do great. He was an angel and didn't even make a peep for 40 minutes. Of course there was a video of the magic school bus and he had his favorite flashlight with him. In my opinion those people are too quick to put a child to sleep for such a simple test. So HA!

After that episode, they sent us down for Jake's PFT's (cardivascular test) Jake had to wear a mask like the kind he had to breath the gas for radiation. I think when he saw it he got scared. I just explained that if he took a few really deep breaths, we would be able to LEAVE! He took a really deep breath, and the nurse said OK YOU ARE DONE! We where outta there! WHHHEEEWWWWWWW!

Next he headed upstairs for blood, urine and a quick physical exam by Doc Driscoll. Doc said he looks great and he's gaining weight! a whole 29lbs!! YYIIPPEE!!! :o)Also, Doc Driscoll made mention of the ole HICKMAN comin OUT! YEAH! It will be replaced with a port, this is so Jake can resume somewhat of a normal life for the next year. So, I think maybe sometime in September Jake will have his port placed. I gotta schedule that with Dan the Man.

Doc Driscoll was pleased with Jakes blood counts:
WBC 4.7
Platelets 101,000
Hemaglobin 12.0

Yep, looking pretty DOG GONE GOOD! Doc Driscoll blew in and outta there quick, he was on rounds on the unit and made a special trip down for a few of "his neuroblastoma patients" that where at clinic at the same time. At clinic we saw some old friends and met some new ones. It was a great day. After that Auntie Pat came over and had dinner with us and whollered Jake a while.

Thursay (today) Well, let me just start by saying CAN ANYONE EVER COMMUNICATE WITH EACH OTHER? We where told to report to radiology at 10AM, well we showed up early simply put on a rat race! GO here...NO you're supposed to be here...PEOPLE! Please get it together! Well, Jake finally got his bone scan injection, he was sedated, then given a CT scan and finally the Bone scan and Bone Marrow aspiration. His aspiration was preformed from the hip bones in the FRONT YIKES! I'm sure it's painful because he's limping a little now. After Jake awoke from the sedation he was very thirsty and cranky. After he woke up a little more he had no complaints. Jake said let's go home! So we hopped in the car and drove straight home! The little champion, just ate almost a whole bag of goldfish on the ride home.

Well, we should have most of the results back by mid-next week. The Bone Marrow Aspiration takes a little longer, it's sent to California. SO, I'll update on any new news ASAP I promise. I'm just so glad to be home again with my family.

Thank you all for keeping Jake in your thoughts and prayers today! We REALLY appreciate it very much!
XO

Wednesday, August 22, 2001 at 1:00PM (EST)
Hello Jake Fans!

Well Tweetsie was a BLAST! We got up early last Saturday AM and hit the road. All along the way we were thinking what a DREARY DRABBY day it was going to be because we were driving in the rain. Once we made it to Blowing Rock, I said "Lord, we have waited too long to finally have some fun. Are you going to let the sun shine through?" He moved all of the clouds right out of the way. It was a perfect day for Tweetsie. About 75 degrees and with a very nice mountain breeze blowing all day. I couldn't have asked for better weather.
**SEE PHOTOS**

Duke called and we are FINALLY scheduled to be there on Wednesday the 29th and Thursday the 30th. Jake's CT, Bone Scan, and Bone Marrow aspiration will be done on Thursday. Please keep him in your thoughts and prayers during this time.

Clinic was a breeze again today. Dr.McMahon and Kathy Lamm fight over who get's to examine Jake. It's pretty funny, those two act like brother and sister. We love the whole team, they are so good to Jake.

Jake's counts today stand at:
WBC - 3.6
Hemoglobin - 11.3
Platelets - 114,000
ANC - 1,332 YYYYYYYYYYYIIIIIIIIIIIIIPPPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
NO GCSF, and the White's are holding their own...GO WHITE'S GO....SHOW EM' WHATCHA KNOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dan "The Man" wants to see Jake again on the 5th. He says that "IF" Jake's counts are still on the rise, he will see him about every three weeks. What...you mean back to a "some-what" normal life again???...Is it possible??? I think so, I hope so, and I've prayed SO HARD for it......Of course it is going to take some getting used to. We are so used to seeing doctors SO often. I think more so for Brian and I, than Jake.

Brian and I appreciate all of the encouragement along Jake's journey. The power of prayer and friendship is truly AWESOME!

I'll update again after Duke. Until then.......
XO

Friday, August 17, 2001 at 03:15 PM (CDT)
Hey Jake Fans!

Well where should I start………Okay, Duke called today and stated Jake’s going to be bumped into the last week of August for his scans. OH YES HOW THE EXPLITAVES FLEW (under my breath of course) little pictures have BIG ears. Anyway, the anxiety is absolutely killing Brian and me. I have been having trouble sleeping and having nightmares. I’m sure it’s normal for anyone who’s in our situation…..

We are trying NOT to let it CONSUME us, but GOOD GRIEF!!!!!!I WANT THIS OVER WITH!!!! The fun is just beginning; we have to go through this every three months for a year. GOD PLEASE GIVE ME STRENGTH!

Miss Tina came out this morning to draw Jake’s labs. He loves her….he whimpered “where’s Nurse Tina” until she got here. She drew his labs and was off! Nurse Chris called and relayed the results:
WBC 4.1
Platelets 100,000
Hemoglobin 10.9
ANC 1,230
Not too shabby! Our boy is FINALLY MAKING THOSE WHITE'S!!!!!!!!!!!!!!!!!!!!!!!!!!!YIPPPPPPPPPPPEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So we’re off to Tweetsie in the AM. Jake’s so excited about seeing the choo choo train, he’s ready to go NOW he says!

Okay, now for a funny…Jake and I had to run some errands this afternoon. We got to the grocery store and he decided he wanted bananas. I picked only two (he’s not a big banana fan) and he decided to pull them apart. ALL THE WHILE it must have been senior day(NO OFFENSE), because the store was packed....of course he got the usual stares because of “BIG BLUE” (wretched blue mask), all of the sudden he picks up one of the bananas and starts acting like he’s trying to talk on the phone to me. “Hello mama!” “hello”, so I figured since we were already getting the eyeball from everyone, we’d act silly together! Through the WHOLE grocery store we talked to each other with bananas in our ears. We had so much fun!!!!!!!!!!!!!

Well Doc McMahon wants to see Jake next Wednesday, so I’ll update y’all on the road trip and the doc visit Wed or Thurs next week. Brace yourselves for some great photos!!!!!!!!!

XO

Wednesday, August 15, 2001 at 02:17 PM (CDT)
Okay Jake Fans here ya go!

Jake saw Doc Dan The Man today (who looked and acted like he had a well rested vacation) and says we cleared to stop the gcsf AGAIN! HERE WE GO AGAIN, I hope he can stay off this time. Doc McMahon seems to think his cells have started to graft! YIIIIPPPPPPPEEEEEEEEEEEEEE ! ! ! I have all the FAITH in the world in little Jake, Keep on growing cells!!!!!!!!!!!!!!!!!!!!!!!!!!

Jake hasn't had GCSF since Monday, so today's labs show his WBC is 4.6, Platelets are 96,000 and his hemoglobin is 11.7. ANC level is 1,880. He's hanging in there. Ms Tina will be out on Friday morning to draw labs and see how he's hanging on....On the way out of clinic this morning we ran into Angie and Amber Cassell. Amber looked great, cute as ever.

I asked Doc McMahon if Jake could venture to Tweetsie Railroad, he said sure! As long as Jake is out in the open he's cleared to NOT wear the "MAC"(that's big blue mask in jake talk) If he's anywhere else like Walmart or the grocery store etc... he still needs to wear the mask. So, we have purchased tickets and will be headed towards Boone SOOOOOON! :o) I think we are going to make a beach trip here soon too! Gotta get away .....gotta get AWAY!

Doc McMahon says to start Jake back on the Septra (oral med to prevent any sickness) Septra takes the place of the wretched PENTAMIDINE Treatment!!!!!!! YEAH!!

Jake's still on the Acyclovir and will be on it for a while or until Doc Driscoll sees fit. Jake is a champ, I fill the syringes with the meds and he says "NO I DO IT!" So, I give it to him and he squirts it in his mouth. He does the same thing when I flush his lines. He amazes me all the time. He's so independent...he's so 2 1/2!

Okay, Duke called and is scheduling Jake's scans for next week sometime. I haven't heard back from them today, so I'll update everyone when I know for sure. Apparently he's being scheduled for a CT, Bone Scan, and a Bone Marrow aspiration and will have to be sedated for all. No MIBG test!! That test is lengthy. Bridgett (NP) at Duke says be prepared for at least two days in Durham.

That's all I have for now.. I'll update again as soon as I have any news..

Thank you for your continued thoughts and prayers, we appreciate them very much.

XO

Thursday, August 09, 2001 at 03:52 PM (CDT)
HEY THERE Jacob FANS!

Well, The LaValley visit was good. Jacob loved being able to play with someone. We ate pizza, Jess and I caught up on what we could...trying to keep up with all those boys. Mathew was as sweet as always. **SEE PHOTO**

Wednesday's Doc visit was great! We saw Kathy Lamb, she is soo sweet. Jake's labs were drawn and then Jake had Kathy Lamb and Morris dancing to the dragon tails theme song. You should have seen it, he was having so much fun!

Jake's WBC was 5.7, Platelets were 102,000 and Hemaglobin was 11.7 all still good. The WBC'S are still getting a boost from the gcsf. Jake will now get a dose of gcsf every three days. I'm hoping that his cells will GET THE MOVE ON!

On the way out of clinic I ran into The Griffin Family. I was so glad to see them and Spencer, he looked great! Also, while Jake and I were headed to the parking lot, we ran into Steve Hagler. Steve stated Jill had been moved back onto to Dickson Heart Unit, and was being monitored closely by doctors. We will keep their family in our thoughts and prayers.

I'm STILL WAITING ON DUKE to let us know whaen Jake's scans are going to be scheduled. Brian and I are quite anxious to get some word, and get those ever grueling CT, MRI, MIBG and Bone marrow aspirations over with for Jake's sake...

That's all for now...I'll update again soon

Don't forget to check out the new photo!
XO

Monday, August 06, 2001 at 04:48 PM (CDT)
Hello Hello Jake Fans!

***UPDATED PHOTOS WITH SOME TRACES OF HAIR!!

Jake has been on the gcsf every other day now since Friday. I am anxious to see his labs on Wednesday. Doc Golembe will be seeing Jake again this week because Doc McMahon is STILL ON VACATION. He better come back with a tan being gone that long!

Anyway, Jake and I ventured out into public this morning. Jacob wearing "BIG BLUE" (The insulated blue surgeons mask) To say the least some people just don't have any tact. I won't go into alot of detail, but I'm sure you can imagine the stares he got. JUST COME ASK ME WHAT'S WRONG WITH MY SON FOR PETES SAKE!!!!!!

Anyway, We went to the bank and the grocery store. Jake was glad to get out and I was too. I know he's protected with the mask on, and I feel a little more secure knowing that he's wearing it, but it was HOT outside today. I felt guilty after we got back because Jake has to breath through that and this heat! We weren't outside for any considerable amount of time, but I still felt guilty. As we were leaving the grocery store, Jake wanted to ride the dinosaur ride for the litle kids. I told him no (because everywhere all I see is DIRT and GERMS) and he started to cry. I stopped right in my tracks and said ya know what? you deserve to ride this ride for as long as you want! I dug out about a buck fifty in quarters little Jake rode the heck out of that ride! I thought why not, he hasn't had any fun in sooooo long. I cannot wait until he can play without that mask and do what normal little kids do!

Tomorrow we are going to try and visit The Lavalley's if they aren't too tired from their Duke visit today.

Jake is still doing really well, he's a wiz on the pc and is learning more and more everyday. I'm so very proud of him!

Brian and I continue to be amazed everyday with Jake. I woke up this morning to a little man nose to nose with me. Once I focused in...I realized I was looking into the most beautiful brown eyes I have ever seen, and then there was that smile, and MORNIN MOMMA! How lucky am I...:o)

I'll update again on Wednesday or Thursday about the counts, until then....

Always praying for:
The Families of 5200 and The Rainbow Kids of Charlotte
XO
**
Special prayer goes out for my Grama Lucille who suffered a heart attack this past week. She had an angeo-plasti (sp)procedure and is doing much better now. Granny Lou we love you !

Also,The Hagler Family needs prayer. Jill was admitted to CMC after having a heart attack. Our thoughts and prayers are with her and her family.

Wednesday, August 01, 2001 at 02:34 PM (CDT)
Hello Jacob Fans-

We had a wonderful weekend with Auntie Pat. Thanks again Auntie Pat for being so wonderful to us!

Jake's clinic appointment was today. We were in and out fairly quickly. His WBC is 10.7 (back up) Platelets are 95,000, and his Hemaglobin is 10.7 (good) His ANC level is AWESOME! 7,490. Here's the deal, today we saw Doc Golembe (Doc McMahon is on vacation) Golembe has decided to alternate days of his gcsf dose. So, instead of everyday, he'd be getting it every OTHER day. This is fine with me, we shall see what happends. I just want his wbc to DO SOMETHING on it's own! Jake's weight is good, and he's still eating and drinking those "drinkable" yogurts like CRAZY! Last week I bought chocolate syrup for his milk now, he's loving that too! To say the least he's not lacking in the calcium department. WE WANT STRONG BONES :o)!!!!!!!!!!!!!!!!!!

Doc Golembe still cleared us to play at the LaValley house so, we will probably go this Friday for the day. Lord help me and Jess with four...COUNT THEM FOUR little BOYS! Anyway, I'm excited I get to spend some time with her and especially excited Jake gets to PLAY PLAY PLAY. He craves to play with other little children so badly, it breaks my heart. He'll see the children up the street and say "I go see them Momma". It will be good for us both.

~~On a heartbreakingly sad note, little Ali passed away yesterday. She fought an extremely HARD fight, and will be missed by so many people. Ali touched so many lives, including our family while Jake was admitted on the PBMTU. We are truly heartbroken. Our thoughts and prayers are with The Lamphier Family.

When will the cure be found? How many more children must suffer or pass away? I would like anyone that can, please go to Ali's site and leave a note on her page. I have loaded some photos of Darlene, Ali, Me and Jake from when Jake was at Duke. She is a precious angel, now she's free...
www.caringbridge.com/al/alisonlamp/

Jesus answered him, "I will tell you the truth, today you with be with me in paradise"
Luke 23:43

Always praying for:
The Families of 5200 and The Rainbow Kids of Charlotte
XO

Friday, July 27, 2001 at 02:40 PM (CDT)
Happy Friday All you Jacob Fans!

I just wanted you guys to have a QUICK update on Jake. Ms. Tina came out this morning to draw labs because Jake went off the gcsf on Monday. Well he bottomed out! His WBC is 3.0, his platelets are 96,000 still good and his hemaglobin is at 10.7 still great! But the ANC level is at 660 due to those neutraphils not being strong enough UUUUGGGHHHH!!!!!!!!!!!!!!!!!!!!!!!

So, the gcsf starts again tonight. WHAT A DRAGGGGG! I really thought he would be on his own by now, but I was told not to rush it. Most kids are on gcsf for a WHILE after transplant. It Still stinks!...

I went to the Rainbow meeting last night. WHAT A HUGE TURN OUT! I was so happy to see all the regulars show up and some new ones show up. Alot of the kids were there, everyone looked great! I'm glad to be part of such a wonderful group of people.

Well, Jake goes back to the doctor on Wednesday so we shall see how his counts are then. I'm sure by Wednesday he'll be back up into the 10-15,000 range. I'll update you all then and let you know what's going on.

***News FLASH***
We have HAIR GROWTH! I've never seen my child with any hair, so this is very exciting! It looks really dark like his daddy's hair. I hope it's just as thick and curly! ***AND those long, thick BEAUTIFUL eyelashes are coming back too! What a sight to see :o) **I'll put some photos on when we get some good growth goin!**

Auntie Pat is coming for the weekend. She will be babysitting tonight while Momma & Daddy go out for a MUCH NEEDED BREAK! I think we are going to see a movie. I'm just glad she's here so we can go do something. THANK YOU AUNTIE PAT! WE LOVE YOU!

That's all for now, I hope you all have a pleasant weekend. Thanks for continuing to encourage us by writing in the guestbook. It means alot!

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Monday, July 23, 2001 at 02:09 PM (CDT)
Hello Jacob FANS!!! :o)

Jake's clinic visit was GREAT! IT WAS CROWDED TODAY! Jake and I got to see lots and lots of familiar faces.

Jess, and Mat were there (our best buddies from DUKE) and Ashley Abernathy, Natalie Gladden and Will Strosnider! throw in some food and some talk and you'd think we were at a support group meeting ! ! ! Of course Todd (The Wishmaker) was there too. Thanks Todd for playing with Jake this morning. He wanted to know where you went when we left this afternoon? Jake cracks me up, you can tell him goodbye, and two seconds later he's like... where did they go???? That's a two and a HALF year old for ya!

Doc McMahon pointed out that one of Jake's tubes is on it's way out of his ear. Jake had tubes put in his ear, and his aednoids removed March of 2000. That was his first surgery. The tubes WORKED WONDERS and I'm suprised they've lasted as long as they have! Good job Dr. D @ NEMC!

Jake's been cleared by Doc McMahon to PLAY WITH HIS BUDDY Mathew! YYYYIIIIPPPPEEE!!!!We can go visit Jess & Mat now! I'm so excited!! Jess is too! Jess has a hepa filter in her house, and is an absolute CLEAN FREAK so I don't have to worry. (I mean that in a NICE way Jess) :o)

I'm still waiting on Jake's labs from this morning. I was told by Doc McMahon to STOP the gcsf until further notice. I HOPE THAT JAKE'S WBC will hold it's own without having to start him back on that stuff. It's VERY painful for him. It makes his bones hurt. Yesterday he complained his back was hurting. I hate it when Jake's in pain. So, help me pray that his wbc will HOLD IT'S OWN!!

UUUGGHHHH! The labs results are just in...
WBC is 11.7(I wish it were higher), Hemaglobin is 11.2 (AWESOME), his Platelets are 98,000 (dropped a little, still good) and his ANC level is 9,828 (Pretty darn good). The GCSF issue hasn't been resolved YET. Doc McMahon wants me to wait to hear from him tomorrow AM to see whether DUKE wants it to STOP or not. Last time Jake's gcsf was stopped was 7/5, the count was 14.5 and within 6 days it DROPPED to 3.2, so on the 11th he started back on it. So, we will see. I hope whatever the decision is...it's the right one..

I'll update you all soon. Thanks so much for the encouraging thoughts and prayers! We love reading them and appreciate them very much!

****On a very sad note, Robert Moon (Jake's next door neighbor at Duke) lost his battle last Friday morning 7/20. Robert's family took him home to South Carolina just the day before. Robert was the sweetest child. He will never be forgotten by our family. We will always hold him close in our hearts. Our thoughts and prayers are with The Moon Family. I believe Robert is an angel looking down on Jake from heaven.***

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte

Friday, July 20, 2001 at 03:12 PM (CDT)
Hello Jacob Fans!

Sorry it’s been a few days since I last updated you all. Jake and I have been busy in the kitchen this week. Not only does Jake like to help make lasagna for dinner but he loves to make cookies and decorate them too. He's a very good little helper. He makes me so proud. Please check out the new photos of him in the kitchen.

Jacob is doing really well; he loves to get outside and play when it’s not too hot. This morning we visited out neighbor Ms. Jordan up the street. **SEE PHOTO** and of course she has LOTS & LOTS OF CANDY! We sat in her front porch and visited with her for a while, and then we took the little red wagon for a spin. It’s so nice outside today, Jake didn’t want to come inside at all, until I mentioned making cookies! **SEE PHOTOS**

Jake's still eating really well, I can't wait for him to start gaining some weight. I remember this time last year, he was about 35lbs. He's only 27lbs now. He had more fat rolls, I miss those little fat rolls. The pictures I have of him, don't even look like him now. You can bet, as soon as he starts growing hair I'll have more photos made! :0)

Jake’s headed back to his oncologist in Charlotte on Monday morning. HOPEFULLY his WBC will be high enough he can come off the GCSF. I know he’s tired of getting that medicine in the morning. I know it makes him feel cruddy. Normally he lies down on the couch for an hour or so, and then he unleashes his WILDNESS on me!

Thanks Todd for coming to meet Jake last night. (Todd is helping make Jake's wish "trip" come true) We enjoyed your visit and hope to see you soon. Jake showed Todd the ropes on the computer with Winnie the Pooh last night. He's a wiz kid I tell ya!

Well, he’s taking a nap right now so I’m going to try and get some stuff DONE around here. Thanks for all the kind thoughts and prayers. We appreciate you all signing the guest book, it means a lot to us. I'll update again on Monday. Have a great weekend!

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

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Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.
Ephesians 5:20
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday, July 16, 2001 at 03:51 PM (CDT)
Hello All you Jacob Fans!

Jake's clinic visit went really well today. Jake's WBC is 6.9, his platelets are 105,000 and his hemaglobin is 10.8 Jake's hanging in there like a champ! We will be headed down to CMC for weekly visits from now on. :0)

Jake's been back on GCSF since Wednesday the 11th. I'm hoping he won't have to be on it for much longer. I'm glad to see is ANC levels rising. This decreases the RISK for infection :0)

I was so glad that Jake was able to see his Doctor at HOME!!! Duke was getting to be very sad. I needed a break. I received an email from a friend of mine last night in reference to two more children that passed away that had been to Duke for treatment. It's SO sad to get to know these families and watch their hopes and dreams shatter. It's heart breaking....I have however made some terrific friends up there and hope I'll have them for my lifetime.

Seeing everyone at clinic was good. All the nurses and staff remembered Jake. Of course he knew right where he was once he saw the helicopters on top of CMC. He knew we had to to ride the aligators (elevators) to get to the clinic. He knew we were headed to the "bubble room" he calls it.

It was really good to see Doc McMahon, I had for got how FUNNY he is. He loves to get in those JABS! Anyway, Jake offered his usual goldfish crakers to him, and of course he ate some with Jake. Doc McMahon said to me, Who would've thought Jake would be where he is right now? Jake looks GREAT and has responded very well to everything. I agreed and thought to myself, ya know you are right, Brian and I were scared to death in the beginning. Doc McMahon and his staff were ALL THE HOPE WE HAD! I remember the day Jake was diagnosed. I felt like everything was happening in SLOW motion. I will NEVER forget the look on Dr. McMahon's face when he was explaining what Jake had and how to treat it. I remember thinking this is bad...this is really bad. Doc McMahon was STRAIGHT and UPFRONT with Brian and me. He never gave us false hope, he's a straight shooter. Brian and I will never be able to thank him enough. Of course when we tried he said it was all up to Jake, and he really didn't have alot to do with it. Doc, you are one humble man. We thank you very much for helping us get along this far!

Eight months have past, and look at Jake now. That's our focus. Brian and I are trying not to look to far into the future, but savor each day we have right now. I'm still amazed at what Jake's been through in such a short amount of time. I'm enjoying being with my son everyday waking up to see his smiling face. What a beautiful thing to see first thing in the morning. Brian and I are truly blessed.

Until next time....

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Friday, July 13, 2001 at 09:05 AM (CDT)
Hello Family & Friends-

Just a quick note to let you all know how Jake is doing. Since starting back on his IV MED GCSF, he has been VERY CLINGY. He wants me to hold him alot, because his bones ache pretty bad. I've been told to give it to him early in the AM. He walks a little slower in the beginning, but as the day goes by he's spinning out of control.

He's eating well and loves his french toast sticks in the morning. I think he's going to turn into one. Next week will be a different story I'm sure.

We are headed for CMC's clinic on Monday morning to see Dr."Dan the Man" McMahon, Jake's wonderful oncologist. Looks like we will be visitng him at least once a week for a while. Beats that 2 hour drive any day. Of course they did take wonderful care of Jake up there and we will miss them all. But, we have to be back sometime mid-August for the 3 month scans and tests.

As for me and Brian, we are so thankful to be together with Jake as a family again. We are very grateful. I thank god everyday. We have been SO blessed with GREAT support and loving family and friends during Jake's Journey. I know we will NEVER be able to thank everyone enough. Our hearts have been touched by so many generous, kind and loving people. We appreciate you all very much.

**Special THANK YOU***
With all of our hearts we thank the Nowata Country Club. The "Hope foe Jacob" Golf tournament turned out HUGE! Bigger than anyone expected, especially us. Brian and I are forever grateful for ALL the kind, GENEROUS, and loving efforts from everyone that were made on our behalf. Thank you to all the Windsor Bunch and Poppy & Grama Cindy, we love you all! Hope to see you soon!

That's all folks...

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Wednesday, July 11, 2001 at 02:09 PM (CDT)
Hello Jacob Fans!

Well, today is day 56 post transplant. I can't believe how time flies! The trip up this morning was nice. Jake slept the ENTIRE time. What a blessing, he usually gets REALLY CRABBY if he wakes up and we're not here yet....

Jacob's WBC DID NOT increase much at all. In fact, it was 3.2 on Monday and today it's 3.4 WHAT A DRAG!! So...Jake has to be started BACK on the IV MED (GCSF) the white blood cell booster. Jake's platelets are 106,000 and his hemaglobin is 10.5, I just wish those wbc's would GROW by themselves, but we CANNOT take ANY risks!

Jake saw (NP) Tracey Kelly today, she's a really nice lady. Jake loves to flirt with her..imagine that will ya. Anyway, the pentamadine (breathing treatment) went okay except for the fact that a little leaked out of the container and more had to be added. So, the treatment went a little longer than it should've. Jake of course WAS NOT A HAPPY CAMPER. Ater the treatment was over he spat, coughed and gagged for the usual 5 minutes. Then he was like..let's GET OUTTA HERE MOMA! Once the treatment was finished, Jake was given his first dose of the gcsf. (NP) Tracey Kelly said that he was given a HIGH dose, so he should experience bone pain. She said I could give him Tylenol when he starts to complain, and it should help.

The trip back was uneventful. Jake fell asleep for the whole way home. I'm telling you his little body is in overdrive. He is sleeping alot latley.

When he's not sleeping he's on the computer playing his interactive DISNEY programs his Aunt Kelly in Hawaii got him. HE LOVES THE PC (go figure)...I cannot get him off of it, and when he sees me on it...well he doesn't want to share and wants me OFF OF IT! He's a little genius! You should see him, he knows how to manouver the mouse to get the software started. It's amazing to me that a 2 1/2 year old can do the things he can. His Daddy came home to Jake on the PC last night and stood there in amazement over how Jake was with the computer. It keeps his interest and he learns so much!
**Thank you Aunt Kelly for the software**

Well, that's all the news I have for now. I appreciate all the continued prayers and encouragement you all write in the guestbook. It truly means alot to us.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Monday, July 09, 2001 at 03:00 PM (CDT)
Hello All you Jacob Fans!

Jake's labs were drawn this morning. His WBC is 3.2 YIKES! (remember the gcsf was stopped on Thursday) Platelets are 114,000 YIPPPEEE and his Hemaglobin is 10.9. Jake's ANC levels are around 768, so this means we just have to be even MORE careful around him. GROW CELLS GROW! All you white cells are on your own now, come on and show us what you've GOT!

Jake's quite tired today. He hasn't eaten much either. Some days are better than others. He just seems SLAP WORE OUT. I'm sure his little body is in over drive since the gcsf was stopped.

We head back up to DUKE on Wednesday morning. Jake will be getting the pentamidine (breathing treatment) and seeing Doc Martin I believe. It will be an eventful day I'm sure.

That's all the update I have for now, I'll write more on Wednesday afternoon. Have a good day and thanks so much for signing the guestbook!

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Saturday, July 07, 2001 at 12:55 PM (CDT)
Happy Saturday Everyone!

Jake and I have been outside playing for most of the morning. Brian and I bought him a beach tent that we use to shade him from the HOT sun. It worked well, we ate lunch under the tent and then read some books. It was very nice being outside getting some fresh air for a change. Jake doesn't like all the bugs, but ya know you have to work around mother nature...

Jake's tires easily now, he normally doesn't take a nap until around 2PM everyday, but here lately he's tired right after lunch. He's been through so much these past few months, I think it's catching up with him..

I started giving him chewable vitamins every morning. Doc Driscoll said not a bad idea. So, EVERY MORNING THE FIRST THING HE WANTS TO DO IS EAT HIS VITAMIN (VIMADIN)that's what he calls it. He'll say "momma I love my vimadin's" Then he rubs his belly. He cracks me up!

Anyway, home health (Nurse Tina) will be here on Monday morning to draw Jake's labs for Duke to observe. I'm hoping Jake's WBC will do good enough on it's own. I'm praying for that everyday!

Wedesday we have to be back for THE LAST CLINIC visit until sometime mid-August. I will be so excited to see all of our friends at the Charlotte clinic. I have posted some new photos of Jake playing outside, before you go check them out. He's a HOT ROD I tell ya.

Have a great weekend.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.

XO

Thursday, July 05, 2001 at 02:20 PM (CDT)
Hello ALL YOU JACOB FANS!

It's been a few days since my last update...BOY have I got some GOOD news for you!

Well, today was the weekly trip up to Duke. Jake slept the whole way, he's been tired alot latley. Once at clinic he becomes Mr. Cuteness with all the nurses. He's such a HAM sometimes..

Doc Driscoll saw Jake today (I REALLY LIKE HIM) and said that all looks GREAT! Jake's WBC is 14.3!!!!!Platelets are 98,000!!!! and his Hemaglobin is 10.5!!!!AWESOME!!!!!!Now for more good news...The IV drug GCSF (WBC BOOSTER) has been stopped!!!! YIPPPEEEEEEE!! ALSO the oral zantac (for his tummy trouble from left-over mucositis) has been stopped too! Now Jake only has ONE oral med "acyclovir" (this prevents chicken-pox etc...) to take until his 100 day mark!!!!

Also, Jake is allowed outside WITHOUT a MASK!!!(MAC he calls it) He only has to wear it in the clinic/hospital environment or around any construction!! When we got home today, I asked him if he wanted to check the mail with me, he said yes and "where's my mac?" I said you don't have to wear a mask outside anymore!! Yipeeee, he just smiled and acted like he'd never had to wear it outside before....

Jacob has to be back at Duke FOR THE LAST CLINIC VISIT next Wednesday. Jake will have the infamous pentamidine (breathing) treatment YYUUUUCCCKKKYYY!!!. I have a feeling this one won't go as smoothly as the last....Anyway, Doc Driscoll says that Charlotte can monitor Jake until it's time for more tests and scans sometime in mid-August. That's fine with me! Lookout Charlotte HERE WE COME!!!! YEEAAAHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I asked Doc Driscoll what he thought about Jake going to Disney World around Halloween, his reply was MOST DEFINATELY! So, it's a GO! We are ON HHUUURRAAYY!!!!:)Jacob is busy in the mean time identifying all the Disney characters he can. He wants to be prepared for the big day. He's pretty good at it.

Today, Jake and I saw a few kids that were on the PBMTU floor with him. It was really nice to see them and their parents. I enjoyed visiting with them and catching up on their daily lives as out-patients.

~~~~~~~~Fourth of July news:~~~~~~~~~~
Jake and I sat on the front porch while watching Daddy light the fire-works and getting SOAKED from the rain. After about two noisy ones, he said I'm going inside. So, he watched the majority of the festivities from behind the storm door. I don't think he was very impressed it at all. Today, he keeps telling EVERYONE about all the fire-works he saw last night. Now, he wants MORE. We'll see how he does with the sparklers we have left over??? Who knows, maybe he'll like those better.

That's all the news for now. I'll update you all again very soon.

Always praying for:
The Families of 5200 & the Rainbow Kids of Charlotte
XO

Monday, July 02, 2001 at 01:41 PM (CDT)
Hello Family & Friends-

We had a good weekend together. Jake continues to do great! He did run a MILD fever (99.7 - 100.1)Saturday night and Sunday, but it's gone now. This morning Home Heath Care Nurse Tina came to draw Jake's labs. I thought I heard Jake talking to someone. I was in his room straightening up AFTER HIM, anyway I hear him say "come on in" I go out to the living room and there's Tina and Adrienne standing on my front porch talking to Jake through the storm door. I said "how long have y'all been standing here"? Tina said a few minutes, Jake told us you were taking a shower. What a rascal! Usually Jake will come running and tell me when someone is at the door, he's sucha stinker sometimes....

Jake's labs look really good. His WBC dropped a little to 8.7, his Hemaglobin is 9.9 and his platelets are again on the rise to 86,000 PRAISE THE LORD! His ANC levels are 5,133 YIPPPEEEEEE!!!!!!!!!!!!!!!!!!!!He's still holding his own very well!

Jake has drank 5 drinkable yogurts today. He ate a hotdog for lunch again today. I'm so glad he's eating and drinking well again. He slept late this morning. I had to go wake him up about 8:45 this morning.

Brian spent the night at the hospital last night for his sleep apnia test. NO SLEEP APNIA! But, it was very apparent he has a snorring issue going on. His Doc thinks surgery will be needed to fix the problem. I'm assuming he will have surgery sometime in August?? I'll keep ya posted. So, he will have to work that in with everything else he's doing too!

Jake brought me a book about Jack and the bean stalk (with MICKEY acting as "Jack") last night to read. He said "I go see him Momma" pointing to Mickey, and I said "that's right we're going to Disney World in a few months". He said "Yea! I go see Mickey, I go see Mickey"!!! He is so excited about going to see Mickey Mouse & Minnie... We are all excited about seeing the look on his face when he sees those characters face to face...:)

I went to Emily's funeral service yesterday. It was a very beautiful, peaceful, sad goodbye. Jake & I said a prayer for The Dobrowski's last night.
Blessed are those who mourn, for they will be comforted. Mathew 5:4

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Saturday, June 30, 2001 at 11:12 AM (CDT)
~~DAY 47~~

Hello Courtney Fans!
Well, I have received MUCH FEEDBACK about keeping up with my journal entries. It's good therapy for me to pour my heart out to all that stop by to read it.

Well, Jake's doing really GREAT! He's eating like a maniac, drinking milk like CRAZY and still loving being at home. This morning I took him outside in the yard. All of my neighbors came out to welcome him home. We live in an older neighborhood, so all the little elderly ladies just eat Jake SLAP up! It wa so nice to see them again. Jake was protected by wearing his mask outside. He loved it. He walked around the yard and other neighbors yards investigating what he'd missed for the last few months. HE was quick to point out all the birds and BUGS!

We don't have to be back at Duke until Thursday. Jake is still on the iv med GCSF to boost his white count. He at least be on it until we go back to Duke, maybe they will stop it Thursday?? Jake's also still on two oral meds acylovir & zantac. He takes them no problem.

I went to the Rainbow of Hope meeting on Thursday night. I was so glad to see the ones there and sad for the ones that weren't there. We had a GREAT turn out and meeting. The Make a Wish reps were there to explain how to go about getting a Make a Wish trip started. I found out that Jake was not eligable for his wish until he turned four. This bummed me out, but I figured we'd take him somewhere this fall if we could. When I got home Jake ran up to me and said "me hold you Momma" So, we sat in the rocker and I rocked for about an hour. I thought about the last few weeks...and then months....what an emotional roller coaster ride we've been on!

Friday morning I received a call from the Child Life Rep here in Charlotte at CMC, his name is Todd. Todd said that JAKE WAS ELIGIBLE FOR HIS TRIP NOW TO DISNEY WORLD!!!! YES,THAT'S RIGHT MICKEY GET READY JAKE'S COMING TO SEE YOU IN OCTOBER FOR HIS MAKE A WISH TRIP!!!! WHAAAHOOOOO!!! GRAMA CINDY & POPPY ARE COMING TOO!!!! I'm soooo excited for Jake I can't see straight. We just ran through the house and jumped and hollered and ran around in circles again and again!!!

Yesterday was a HIGHLY emotional day, I received good news about the Make a wish, and bad news about my good buddy Jonathan that works with me at Pillowtex. Jonathan's cancer is back. He said it's in his lungs and there's also a mass in his abdomen that he can feel, it's the size of a tangerine. I need everyone to help me pray for Jonathan and his family. Jonathan has fought SO hard since his Osteosarcoma diagnosis in January of 2000. Jonathan, if you read this..I want you to know how much your strength and courage inspire me everyday. There is NOT a day that goes by that I don't think about you and pray for you.
"Now to him who is able to do immeasurably more than we all ask or imagine, according to his power that is at work within us"
Ephesians 3:20

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

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Almost forgot! A SPECIAL THANK YOU goes out to the WINDSOR BUNCH in Nowata, OK today is the golf tournament in Jake's honor. That you all for all of your HARD WORK and efforts on our behalf. We wish we could be there, but you know we are there in spirit!
XOXOXOXOXOXOXOXOXOXOXOXOOXOXOXOXOXOXOXOXOXOX

Thursday, June 28, 2001 at 12:30 PM (CDT)
~~Day 45~~

Hello Family & Friends-

Today is a sad day. Emily Dobrowski lost her fight with cancer yesterday 6/27. She developed a blood infection on Monday and couldn't recover from it. Her kidneys were failing, Dave and Judy had to let her go be with the lord.

I got to know Dave Dobrowski through the Rainbow of Hope meetings in Charlotte. Brian, Jake and I met Emily for the first time on June 9th. Emily fought so hard to get to Duke for her transplant. Emily had just gotten out of the hospital at CMC after spending 3 months battling the flu. She knew she had to get better if she was going to go to Duke. Yes, she fought hard. Emily arrived at Duke the day after Jake's discharge June 7th. I remember walking in the lobby of the University Inn and all of the sudden I hear "HEY CHANDA"! as I looked around I saw Dave sitting in the lobby on the phone. "I said, WHAT ARE YOU DOING HERE"? Dave said "WE'RE FINALLY HERE"! I was tickled pink for him. Dave is and will always be...one proud PAPPA! Jess will remember this, because she was the one on the phone with him. We all wanted to be together up at Duke. If things would have worked out better for Emily she would have been there the same time as Jake & Mathew.

Her Mom and Dad where completely beside themselves. Jess and I had a short visit with them that night. Dave and Judy were so excited they finally had Emily at DUKE! Brian, Jake and I visited Emily the following Saturday briefly. I wanted to take a family photo to share with the Rainbow members down home in Charlotte. Dave had stepped out, but I took the photo of Emily & Judy. What a beautiful smile Emily has. We stuck our heads in and said hello, shot the photo and left shortly after. I wished I would have known that would be that last time I saw her.

Dave's journal entries tell the rest of the story. Emily will be missed by so many people. I know she is a true inspiration to many people. Her determination, and courage never failed her...even up to the end.

God Bless you Dave and Judy, Katie & Dana. We are all thinking and praying for you all to heal.

I'm going to share the photo with all of the Rainbow members tonight. Jessica wanted me to let everyone know that Dave & Judy want us all to celebrate Emily's memory. Remember to good times, not the sad ones.

This strengthens the need for research. Cancer is such an ugly beast, that must not continue to make our children suffer. Please contribute to cancer research. Details on how to contribute are located at the following site: www.nccf.org

XO
PS, Jake is doing great! We very much appreciate all of the thoughts and prayers you leave while signing the guestbook.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte

Wednesday, June 27, 2001 at 03:37 PM (CDT)
~~DAY 44~~

Hello again all you Courtney FANS!
Another quick update to let you all know the Duke clinic visit went well. Jake's counts are outstanding! Getting better and better. His WBC is 11.1, platelets are 66,000 and his hemaglobin is 9.8.

We saw a few of our friends from the unitin clinic today. Candy & Lydell are doing great! and we got to see Ms. Tina the social worker for the unit. She works so hard for all the families on the unit. She's the one who coordinates financial assistance for all who need it. I can't thank her enough for helping us with The NCCS and The Rick Hendrick Marrow Foundation. Both of those organizations are incredibly generous.

Doc Martin said all looks realy good. Jake will continue on the GCSF (WBC Booster) and the other two oral meds. Doc Martin said that he didn't need to come back for a visit until July 5!! Doc Martin did make mention of Jake's Pentamidine (breathing) treatment being due July 13.

All post-transplant scans & tests will be scheduled sometime in mid-August. Doc Driscoll will schedule them and I'll know more toward that time.

Jake slept the WHOLE WAY HOME! What an angel. When we pulled in the driveway he said "we home...we home"!! We are truly SO GLAD TO BE HOME! In the meantime, Jake is doing great, loving being at home. He's eating like a maniac and drinking MILK MILK MILK like crazy!!

***********GOLF TOURNAMENT*****************
Saturday June 30th The Nowata Country Club, in Nowata, Oklahoma is holding what's turned out to be a HUGE Golf tournament in Jacob's honor. THANK YOU ALL FOR ALL OF YOUR HARD WORK AND EFFORTS ON OUR BEHALF. You all have a very special place in our hearts. Poppy and Cindy, we love you so much and miss you bunches, we hope you guys have a GREAT golf game FOR JAKE! We will be there in spirit! XOXOXO

That's all the news I have for now. I will update you all again soon. Thank you all for signing the guestbook and leaving the encouraging thoughts and prayers. We really appreciate them very much.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

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Please continue to keep Emily Dobrowski and her family in your thoughts and prayers. Emily remains in PICU at Duke.

Tuesday, June 26, 2001 at 11:58 AM (CDT)
~~DAY 43~~

Hello Family & Friends-

Just a quick note to let you all know how Jake's doing. Seems some of you are suffering withdrawls from my daily journal entries..THAT'S OKAY! I CAN'T HARDLY BLAME YOU!

Yesterday OUR FAVORITE HOME HEALTH CARE NURSE MISS TINA came to check in on Jake and draw his labs for the Duke Doctors. It was SO good to see Tina. Jake missed her too. We got caught up on things and she was on her way back to CMC's lab with Jake's blood. Miss Chris from the Children's Specialty Clinic (Dr. Dan "The MAN'S NURSE) called and let me know that Jake's WBC was 10.2, platelets are 52,000 and his hemaglobin is 9.4 PRETTY AWESOME HUH?

Chris said that she had heard that Jake did really well up at Duke wit his transplant and she couldn't wait to see us. I told her we missed them terribly and I would un-leash Jake on them as soon as I get the word from Duke.

Jake is ABSOLUTLEY DOING GREAT! He's eating really well. Yesterday he ate 2 hotdogs for lunch. He's drinking milk like CRAZY and he's HAPPY HAPPY HAPPY! I cannot express enough how happy we all are to be together again.

Jake is having a hard time sleeping at night. So, Momma has to bunk down on a cot right next to him. It's okay, I like being right there anyway. I can't expect him to just sleep by himself when we've been stuck together like glue for the past 3 months.

We bought a tiny toilet seat!!! We have started potty training! What a blast. I'm going to throw a few cherrios in the toilet and have Jake aim for them. How bout that for an idea? I read it somewhere...

Jake and I are headed to Duke tomorrow to see Doc Driscoll. Hopefully his GCSF (WBC bosster) will be stopped, and I'll find out when his other oral med will start. Jake will be on another oral med called retnoic acid for 6 months POST-TRANSPLANT. It's part of the transplant protocol. Anyway, I'll also find out when we have to be back, or if CMC can monitor Jake for Duke. I'll find out too about all the post transplant scans and when they do another bonemarrow aspiration to test for any neuroblastoma cells. As soon as I know, I'll let you all know.

I sure appreciate all the encouraging thoughts & prayers from everyone. You words are very comforting to us. We appreciate them very much.

**Special prayer for Emily Dobrowski, she had to go to PICU last night, due to a blood infection. Her transplant is being done today in PICU. PLEASE..Please keep her, and her family in your thoughts and prayers**

*****Check out the NEW photos before you go*****

Always HOPEFUL & praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Sunday, June 24, 2001 at 04:11 PM (CDT)
~~DAY 41~~

Hey ALL you Courtney Fans!

Home again ...Home again....

All I can say is HHUUUUURRRAAAYYYY!!!!!We are home. Jake held our hands the WHOLE way home. He was so excited to be going home. Once we arrived at the house. I carried him in and he immediatley wanted HIS DADDY to hold him. I think he was scared at first, but after we walked him through the house he remembered "his house". I remember walking in thinking this house smells BRAND NEW! I cannot thank Brian enough. He worked very hard to clean every inch of this house. It sparkled EVERYWHERE! I am such a lucky woman to have such a WONDERFUL husband!!

Fivel (our fighting fighter fish) jumped and swam round and round really fast as we came in. He missed us too!

I unpacked for 4 hours straight. I had to get rid of stuff out of Jake's room before I could bring the new toys in. GOSH he has alot of TOYS! He acted like he was in a toy store. To say the least, Jake tore his room up completly! He kept bringing all of his toys in our bedroom, in the living room, saying "look at this"..."look at this". He was so excited to see his bed & toys, he didn't know what to do with himself.

Brian went to the store and bought some steaks for dinner. I missed his cooking on the grill. I was so glad to be eating dinner at our dining room table TOGETHER! It was AWESOME! Brian and I kept looking at each other and smiling all night long. I can't get enough of my boys! After dinner we relaxed in the living room watching tv. Jake wollered us both all night. I'm so glad he's here to woller us!

We all wiped out around 11PM last night. It was so good to sleep IN MY BED!! OH HOW I MISSED MY BED! We all got a restful nights sleep. I have spent most of the day still organizing and running errands. My guest bedroom looks like a storage unit. I'll get to it ONE DAY AT A TIME. I'm just looking forward to spending time with Jake & Brian.

Jake didn't have TPN last night for the first time, he woke up STARVING! he wanted pancakes & sausage! He ate a good bit of it. He now loves milk, he asks for it all the time. I'm so glad! :)

Thank you GOD, for giving our family the strength to endure these past 7 months, it has been very hard but it has been well worth it. Brian and I have our son back on the road to a healthy life. We are looking forward NOT BACK! We are always going to be hopeful for the REST of our lives. Jake still has a long road ahead to recover. He still has more tets, and doctor's visits, but that's okay he's better today and we are very happy and grateful for that.

I will continue to update this web-site, just not as often. Probably more on a weekly basis. You all have my email address, and please keep in touch. If you want to know how we are, just drop us a line, we'd be glad to reply.

We want to THANK EVERYONE OF YOU FOR ALL THE ENCOURAGING THOUGHTS & PRAYERS. It brightens our day to read them. You all have a very special place in our hearts. Until next week..

****PS*****
Jess & Mat, we miss you terribly. Hang in there, stay strong. We love you both lots & lots! You guys are doing GREAT!XOXOXOXOXOX

Always Praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Friday, June 22, 2001 at 11:10 AM (CDT)
~~DAY 39~~
HALLELUJAH! WHAOOOOOOO! We are done with clinic up here until next WEDNESDAY! YIPPPPEEEEE! After 6 weeks of being here we are KANNAPOLIS BOUND!!!

Jake's doing GREAT! His WBC id down to 6.4 (remember the GCSF was decreased to only once a day now), so they are going to monitor that closely. His Platelets are 60,000 and his Hemaglobin is 8.9. He's still holding his own pretty good I might say.

Jake didn't eat dinner last night because he pigged out yesterday at lunch. He's eating a "cheese samich" right now. "Momma, I want a cheese samich" He makes me laugh so hard sometimes. Last night I was watching the Crocidile Hunter on Animal Planet, and anyway I must have been really INTHRALLED because I didn't hear Jake talking to me. All of the sudden I hear "HELLO!!!!!" I turned around and looked right at him and he was waving his hands at me and said again "HELLO MOMMA" I cracked up. I jumped on the bed and wollered him with tickels and kisses big time. I can't believe my 2 1/2 year old did that to me. That totally cracked me up!

I told Jake today that Daddy was coming tomorrow in his truck to take us home to Kannapolis. Jake smiled REALLY BIG and said "HOME HOME HOME"!!!!!! He makes my heart happy...

Well, we are going to enjoy our last night with Jess & Mat. We are ordering TAKE-OUT and eating together for the last time. I will miss them so much. I thank god everyday for Jake's progress and for pairing us & the LaValley's to go through this together. Jess & Mat are doing GREAT! Mat only has a few more weeks HOPEFULLY and then they can come home. I will miss them, but we will get to see them every Wednesday until Doc Driscoll releases us back to CMC.

Can't wait to see everyone there at CMC's Children's Specialty Center, we miss you ALL and can't wait to be back. Boy do I have photos to show!

Well, that's all for now..I must finish packing and keeping up with JAKE! I'll try to update you all again soon...

Thank you ALL for ALL THE ENCOURAGEMENT and PRAYERS and THOUGHTFUL KINDNESS you have shown me and my family. We will never forget it... ever!

********************************************
Special THANK YOU to BILL & BEV WARD, Thank you so much for meeting Brian at Sam's Club to show him which HEPA filter we needed. WE APPRECIATE you BOTH VERY MUCH!!
********************************************
Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Thursday, June 21, 2001 at 02:22 PM (CDT)
~~DAY 38~~~

Hello Family & Friends-
Well, all I can say is you know your kid is feeling good when he's climbing the walls and wanting to GO HOME! He's going mad I tell ya!... cooped up in this motel room. I'll pack a box, and he's right behind me dumping it on the floor. He's already had TIME OUT once today! I'm REALLY VERY GLAD he's giving me such a HARD TIME! I bet that makes a few of you laugh.

ANYWAY, I am packing and organizing and packing and organizing. MY GOSH WHERE DID ALL THIS STUFF COME FROM? OH yeah...thats right....from all of you WONDERFUL, THOUGHTFUL & KIND AND CARING JAKE FANS! We appreciate everything very very much!

Last night we had dinner with Jess & her best-friend Paula. They cooked spaghetti & made a nice salad. IT WAS REALLY GOOD! THANKS JESS & PAULA & MAT for having us over for dinner. Jake ate a 1/2 of an apple & some cheese.

Jake said to me this morning, "Momma I sad" I said why love bug? He said "I misses Daddy" AND OF COURSE I ALMOST STARTED CRYING! I said "I miss daddy too peanut, but we are all going to be together again in two days" He said "ok".

Daddy is scurrying about trying to get the HEPA filter bought for the house. I spoke with him a little bit ago and he says there's so MANY to choose from. I said your on your own, I trust ya. Anyway, we are anxiously awaiting his arrival on Saturday.

Jake ATE VERY WELL TODAY FOR LUNCH! He had two chicken nuggets and a 1/2 of a cheese sandwich. I was so glad. Maybe he'll chunk up again. I miss those fat rolls so bad!

That's all the news I have for now, I'll update you all again tomorrow.

Thank you ALL for the encouraging thoughts & prayers.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Wednesday, June 20, 2001 at 12:07 PM (CDT)
~~~DAY 37~~~
Hey all you Courtney Fans!

Jake and Momma are springing this joint Saturday. WHAHOOOOO YIIPPPPEEEEE!!!!! Praise GOD THANK YOU SO MUCH!!!

Jake's WBC is 10.8, his platelets are 49,000, his Hemoglobin is 8.7. Still Hangin in there like a CHAMP!

We saw Doc Martin & NP Ann today. OF COURSE CLINIC WAS A BLAST! We were in about 2 1/2 hours today. We passed the time away with precious Catie & her Momma Chrystie. They are wonderful folks. NP Ann wanted a urine sample from Jake because Jake complains of his "pee pee" hurting. She thinks it's still the mucositis, but wanted a sample to confirm. Anyway, I asked Jake to pee pee in a cup. He refused, so I bagged him. He screamed at me for about 10 minutes. "I want to take it off"!! I said "if you want it off, you have to go pee pee in it". HE DID IT HE DID IT!! And when he was finished, he said "okay Momma...I go pee pee" I was SO PROUD OF HIM. We danced and sang the DORA THE EXPLORER "WE DID IT" SONG. I think it's time to start the ole potty training when we get home HUUURRAAAAYYY!!!!!!! I'm sure everybody thought I was crazy...but I don't care, he recognized he went pee pee and he told me so. What a happy day!

Jake has his LAST TPN on Friday night. He's been on a roll eating pretty good. I think it will pick up once we are HOME. Daddy will be here either Friday night, or Saturday morning to TAKE US HOME! I told Brian that it would take me two days just to pack up to leave on Saturday morning. I'm so excited..I can't see straight! I know Daddy is happy too!

The GCSF (WBC BOOSTER) has been stopped to only ONCE a day now, and like I said the TPN will stop on Friday. We will have to be up here in Durham at least once a week, Doc Driscoll said so. That's okay with me cause we're going HOME! :0) I won't mind that drive at all.....

Jake has the day off from clinic tomorrow again. So, I'll be packing and organizing our things. You would not believe how much STUFF I have here in this motel room to make our lives a little more "home" like...

Jake's fixin to wipe out for a nap, he's tired. He played hard with Catie this morning. He did eat three chicken nuggets for lunch today. I'm so proud of him.

One more clinic visit on Friday and we are FREEEEEEE!!!!!!! YEAHHHHH!

Thank you all so much for the wonderful thoughts and prayers. We appreciate it so much!

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Tuesday, June 19, 2001 at 01:34 PM (CDT)
~~Day36~~
Hello Family & Friends-
Well, today has been really good. It's really nice outside so Jess & I decided to take the boys out for a short walk this morning before it got too hot. Then we decided to play underneath the empty motel parking garage's shade for a few minutes. We played around kicking a ball and playing koosh ball. I think we were outside for a total of 45 minutes. Both the boys enjoyed being outside for a change. I know Jess & I enjoyed it. We acted like a couple of kids ourselves. After being cooped up inside for so long it's strange playing outside in the fresh air. Of course both the boys had their masks on, so they were protected.

Jake and I came back up to the room to prepare for lunch. Jake said "I want a cheese samich" He cracks me up, anyway..I made him a 1/2 of a cheese sandwich and he ate the whole thing! I was relieved. I haven't seen him eat that much in a while. Here latley it's been a little here and a litttle there. Maybe this will continue..?? I hope!

It was so nice not having to be anywhere today. Jake's labs didn't have to be turned in either. I just didn't know what to do with myself this morning. So, Jake and I just took our time this morning, eating breakfast and getting ready for the day. I think he's worn out from playing this morning. He crashed hard after lunch. He needs to sleep, his little body has beeen through so much these last seven months.

We spoke to Daddy last night. He's been a traveling man. He was in NC,TENN,& GA yesterday. He's going to several places in ALABAMA today, hopefully headed back to NC tonight. We miss him terribly. It's been so hard on us being apart like this. We talk to each other at least twice a day, but we'd much rather him be here in person. Jake asked me this morning "where my daddy?" I said, "he's working baby, we'll see Daddy in a few days". Then he wants to know where everybody else is. It's a daily routine, I have to keep reminding him of where everyone is at.

Well, I hope to bring everyone good news tomorrow. We see Doc Martin in the AM, so I hope he'll be kicking us outta this place. (You all know I'm crossing my fingers!)

Anyway, thank you all so much for the wonderful words of encouragement. We really appreciate it very much!

Always praying for:
The Families of 5200 & The Rainbow kids of Charlotte..
XO

Monday, June 18, 2001 at 11:37 AM (CDT)
~~TODAY IS DAY 35~~
Don't know how I got off track, but I did. Go figure... ANYWAY................

Hello Family & Friends-
Clinic was a BREEZE today, We were in and out of there within 1 HOUR!! Yes I'm probably jinxing myself AGAIN, but that's okay we don't have to go back until WEDNESDAY! YIPPEE! Jake's WBC is at 9.2, platelets are at 50,000 & his hemoglobin is at 9.2. Looking GOOD!

Jake ate almost 1/2 of a pancake and 1/2 of a sausage pattie last night for dinner. This morning he wasn't interested in food at all. For lunch he had a few cheese slices and some chips. Healthy huh?? Yep...That's what I thought. Thank goodness for the TPN! At least I know he's getting some good stuff with that.

No word on when we are going home. My hope is by this Friday????? I HOPE we will find out on Wednesday when we see Doc Martin. I really like him and Doc Driscoll. Jake always steals Doc Martin's mini "mag" light flash light. He pretends it's a candle and tries to blow it out. What a cutie pie.

****BEFORE YOU GO CHECK OUT MY BOPP STOP PHOTOS****

Well, that's all for now. I'll update you all soon. Thanks so much for signing the guestbook.

(Way to make me cry this morning Brian...We love you & miss you alot too!)

Always praying for The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Sunday, June 17, 2001 at 01:35 PM (CDT)
~~DAY 35~~
~~HAPPY FATHER'S DAY!~~

Hello Family & Friends-
Just a quick note to let you all know that Jake is doing great! We all have been watching the US OPEN (It's in Tulsa this year) all weekend trying to catch a glimpse of Poppy & Grama Cindy on TV. Actually we enjoy watching golf. Those guys amaze us.

Speaking of AMAZING! Let's talk about Jake. His Diarreha is getting better. Not as often and a little less watery YIPPEE! Jake is still on two oral meds "acyclovir" & "zantac". He's keeping those down like a champ! Jake is still not eating as much as he should be eating but that's okay. Doc says in a few weeks he'll get better at eating.

Jake is still on TPN that runs from 7PM-7AM. He seems normal with the exception of not wanting to walk sometimes. I think he's still having occasional bone pain from the (GCSF) IV med he gets twice a day. Doc Driscoll says that once Jake's WBC hits 10. he will start to decrease the (GCSF). Sounds good to me! I'm sure Jake will be happy about it too!

Today we have been playing hide -n- seek. He and Daddy have been rough housing around, like "bulls in a china shop". I'm so happy to see that again. I missed them playing around like that. I'm so ready to go home I can't see straight. Jake hasn't complained much at all, he's incredible. **EXCEPT WHEN HE HAS TO TAKE A BATH! He fights me so hard on that. This kid used to live in the tub. I guess that's the least of my worries right now. Daddy is leaving today, his visits keep getting SHORTER & SHORTER. I can't wait until we ALL can be together again. Tomorrow, maybe the Doc's will give me some clue as to when we can look forward to packing up! I'll let you all know ASAP!

Well, that's all for right now. I'll update you all again soon.

Thanks for signing the guestbook! The words of encouragement are very appreciated.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Saturday, June 16, 2001 at 04:46 PM (CDT)
~~~DAY 34~~~

Hello Family & Friends-

We went to Bopp (treatment room on the unit)for the LAST time today I THINK! Doc says that by the way things are looking with Jake, we will be going home SOON! My hope is to be home by this time next weekend. We have spent 39 Days in Durham and we aew READY TO GO HOME! I'm NOT complaining by any means, Jake has come so far in such a short amount of time. I would do ANYTHING FOR HIM, you all know that.

I think Brian and I are a little apprehensive that everything where Jake is concerned has gone PERFECT! Everything has been so smooth, PRAISE GOD! I don't know what I would do without that trust I've found in GOD. I've talked to GOD alot latley...(GO FIGURE) Anyway, everything I have prayed for..he has answered. I have met SO many absolutley incredible people who have helped us as well. We have these new friends for our lifetime. I'm just so excited that we will be on the road to home soon. It was really nice seeing all the nurse's and the one's that were there when Jake was admitted. Some are new, some are starting over with their treatment, and some are getting to go home. Some are heading home because there is nothing else that will help them. Some have left because their children lost their long battle. Please help me pray for these families. They need their strength, healing and peace, that only the LORD can give.

Jake's counts are still looking good. His WBC is 9.8, his platelets are 40,000 and his hemaglobin is 9.0. He's a Champ! I'm so proud of him. Brian and I took Jake for a ride in Momma's car today. It was nice to get out for a short while. After about 20 minutes, Jake was ready to get back to to motel. UGH! Well, we got out for a little while anyway....

We are headed to Jess & Mat's room for dinner tonight. A church in Raliegh that brings food to the unit every month, brought us some food too! How nice! HOME COOKED FOOD!!! YIPPEEE!! So, we are going to eat dinner with them and watch a movie. I'm so thankful to Jess & Mat. They are a true inspiration to me. Of course I've told her that before..She needs to be reminded of it again. What a wonderful mother you are Jessica. I'm glad we are here for each other.

That's all for now. Thanks for all the wonderful encouraging thoughts & prayers. We really appreciate them.

Always praying for the Families of 5200 & The Rainbow Kids of Charlotte

XOXXO

Friday, June 15, 2001 at 01:19 PM (CDT)
~~DAY 33~~
Well, I guess I jinxed myself. We spent 4 HOURS IN CLINIC AGAIN TODAY! That's okay because Jake passed the time away playing with our friend Catie (she's a doll) **SEE PHOTOS** Her and her Mother Chrystie are very sweet. They are the ones that gave Jake the Bubbles pillow & Power Puff Girls's pillowcase.

After 2 1/2 hours, I asked a nurse if I needed to pitch a tent? She looked at me like I was crazy (go figure) Anyway, she said how long have you been here? I said too long! 2 1/2 hours! She then put us in an exam room where we waited another 30 minutes for the doc's to come in.

Well, Jake's coutns are still loooking GOOD! WBC is 9.5, his platelets are 35,000 and his Hemaglobin is 9.0. Little boy is still holding his own. The Rocephine IV drug I'm giving is being stopped this afternoon. NO more IV drugs except the (GCSF) which is what BOOSTS the WBC up. He will continue that until the doc's are satisfied with his counts. Jake's STILL having diharrea, so the TPN will continue. He's eating very little still. Right now he's picking the pepperoni off of a slice of pizza. He won't eat anything else off of it. Whatever he eats is fine with me.

Doc says we can try bananas and yougurt if Jake wants them. He's been BEGGING me for a banana for two weeks. Maybe that will help his tummy trouble. Doc also says that he would bet that alot of the diharrea is from ALL the anitbiotics Jake has to take. Maybe we will see some difference next week.

I just spoke with Daddy, he's ON HIS WAY HIP HIP HURRAYYY! We miss him so much! Jake knows he's coming because he woke up this morning asking for his DADDY!

Dr. Driscoll wants to see Jake on the unit tomorrow, BUT WE HAVE SUNDAY OFF!!! YEAHHHH! SO, maybe we can go for a ride in the car for a while to get away for a little while. Jake can't really be out and about, but the car is okay for a drive. I'm looking forward to it! I know Jake will enjoy it, because that's all he's been asking to do for the last week!

Well, that's all for now. I'll update you all again soon. Thanks for signing the guestbook, it means alot to us.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Thursday, June 14, 2001 at 01:06 PM (CDT)
~~DAY 32~~
Hello Family & Friends-
Well, I don't really have alot to report today. Other than Jake and I have been playing all day for once. Jake has been a wild man all morning. I think he's settling down now.

I called clinic to check on his labs, all looks good. They didn't give me any counts to report. I'll have them tomorrow. I hope his platelets are on the rise still! I'll let you know.

Jake ate a 1/2 a bowl of honey nut cheerios for breakfast and 2 1/2 chicken nuggets for lunch. I'm so glad to see him eating, even if it's a little at a time.

Jake's so used to going somewhere, he's stir crazy in this motel room. He asked me to WEAR THE MASK today. What a trip huh? So he wore it for about an hour. Mathew is hanging out with us right now for a little bit while his mom (Jess) runs some errands. I think Jake is driving him crazy! Mathew doesn't seem to mind him much, he's got two younger brothers at home waiting on him...I sure am glad Jess and Mat are here. I think I'd be NUTS if I didn't have anyone to talk to. Thank the lord for bringing us together!

Anyway, that's all for now. We sure appreciate all the encouraging thoughts and prayers you all are leaving in our guestbook. I love reading them to Jake everyday.

***PS***
Grama Cindy & Poppy, Jake SWEARS he saw y'all out the window this morning. You didn't come all the way to Durham and not stop by and see us did you? Our window faces the parking lot and sidewalk. This morning Jake was standing on the couch watching the guys mowing the grass. All of the sudden he yells "GRAMA CINDY & POPPY!! IT'S GRAMA CINDY & POPPY!!!! By the time I got to the window, no one was there. He was pretty sure it was HIS GRAMA CINDY & POPPY!
HAHA..XO

Always praying for:
The Families of 5200 & The Rainbow kids of Charlotte.
XOXO

Wednesday, June 13, 2001 at 01:46 PM (CDT)
~~~DAY 31~~~
Hello Family & Friends-

Today clinic was an experience. Jake had his pentamidine treatment. What I forgot to tell you was that it's a breathing treatment. Jake and I had to sit in a chair, he wore a mask that was attached to a tube filled with the medicine. We had to sit under this plastic tent. Jake WAS NOT HAPPY ABOUT THIS AT ALL. It's a preventative medicine. Sorta like the oral "Septra" he took everday since he's been diagnosed. But apparently, septra and post-transplant patients don't mix very well. Septra could cause an infection rather than prevent one! ! YIKES!! Anyway, the medicine is YUCKY and tastes BAD. Jake coughed and gagged for about 10 minutes afterward. I made the mistake of kissing his cheek afterward and got a nasty taste on my lips. Poor baby. After about 20 minutes he was okay, and READY TO GO!

**Check out the photos**

Well, Jake's a little CHAMP! He's hanging in there. His WBC is 9.3, his platelets are 32,000, and his Hemoglobin is 9.2. Not too shabby I might say. Anyway, Doctor Driscoll had STOPPED AN IV MED!! WHAHOOOO THE FLUCONAZOLE IS NO MORE PRAISE THE LORD. This is the medicine that takes 70 minutes through a pump. YIPPPEE!!! AND,,,we can skip clinic tomorrow AS LONG AS JAKE'S Diharrea doesn't get ANY WORSE. I'll have to call and check on his counts. As long as the counts are still acceptable, and not alot of diharrea, Dr. Driscoll doesn't want to see us till Friday. YEAH!

Doctor Driscoll thinks the Diharrea is from radiation. So, the TPN will continue until the diharrea stops. Jake is still eating very little. But at least it's staying down!

It's supposed to be rainy and yucky tomorrow, so I'll be glad to snuggle up with Jake and relax for a change.

Amy, Jake's Best Buddy came by last nigh to play with Jake. THANK YOU AMY FOR BRINGING US DINNER & Going to the drug store for me. I really appreciate it!

Well, that's all for now. Update ya'll tomorrow.

********************************************
I found out today in clinic that little Melanie (of 5200) lost her fight last night. Robyn & Barry, we are so sorry for your loss. We will be praying for your strength and healing.

Always praying for:
The Families of 5200, & The Rainbow Kids of Charlotte.
XOX

Tuesday, June 12, 2001 at 11:14 AM (CDT)
~~~ DAY 30 from transplant~~~~

Hello Family & Friends-
Well, I must be on a roll, because clinic was just as pleasant today. Jake and I were there by 9:30A and were out by 11:30A. I think they are getting into the swing of things over there. I'd better bite my tounge or I'll jinx myself tomorrow. Actually...Jake will be in clinic a little longer tomorrow. Jake will be getting a medicine called Pentamidine by IV. So, we will probably be there all day tomorrow...

Jake's WBC were 7.5, his Hemaglobin is 9.0 and his platelets dropped to 28. So, he'll probably have to have platelets tomorrow or Thursday. His appetite has increased very little. He ate a few bites of a hotdog and a chicken nugget last night. AT LEAST IT STAYED DOWN PRAISE THE LORD. Yesterday afternoon, he at a few bites of cheese and it came back up. So, when he asked for a hotdog I was leary, but I fixed it for him anyway. Then when he wanted chicken nuggets, I fixed him 2 and he ate one. I was very happy to say the least.

Jake doesn't know what to do with himself since the continous heparin is gone. He has so much more freedom. He's a little guy, and even with that little pump in that fanny pack was "TOO HEABY" he says. So, anyway, he's glad it's gone and so am I.

One of his clinic friends found out he's crazy about "Bubbles" one of the power puff girls, they bought him the bubbles pillow and NOW WE HAVE TO CARRY IT WITH US EVERY MORNING TO CLINIC. I'll post a photo of Jake & the bubbles pillow for you guys to see what I'm talking about. You can hardly see Jake for this pillow. HE LOVES BUBBLES. I heard him tell the pillow "bubbles I lub you". It cracks me up, he's so cute.

**Special Thank you to the Mililani Mauka Elementary class** Our neice Madison Ross and her classmates made special note cards with encouraging words to Jake. Each note card has an activity on back for Jake to do. This is a real treat. Each and EVERYONE of you are very special to us. I read them all to Jake, and he points out all the pretty colors on the cards. Thank you so much. Thank you to Kelly Madison's mom, we appreciate everything you have done for Jake and us. XOX

Well, that's all for now, I must get more meds ready for Jake. Talk to you all soon.

Always in our prayers are:
The Families of 5200 & The Rainbow Kids of Charlotte
XO

Monday, June 11, 2001 at 11:51 AM (CDT)
Hello Family & Friends-

YEAAAHH CLINIC WAS MUCH BETTER TODAY!!!!!
Jake and I got around and arrived at clinic by 9:30AM, I'm getting better at the morning routine. My Girl Jess down the hall (Mat's momma ) took Jake's labs for me to the LAB this morning early. THANKS JESSICA! It sure is nice to have someone here I can talk to, and she's only four doors down from me.

The doc's saw Jake this morning and are concerned about his tummy trouble (the big D) so they are going to keep him on the TPN and Lipids for a while longer. The loose BM's are very concerning, because Jake will loose valuable nutrients. So, the TPN & Lipids will stay for a while. The continous heparin was DISCONNECTED today YEAH! Now Jake can roam everywhere WITHOUT that pump. He's wiped out now in the chair. Jake has been able to drink some orange gatoraide and had a few goldfish today. That's it so far. I hope he continues to EAT EAT EAT...

We've both had to change clothes several times due to leaky diapers today. The doc's want a stool sample within an hour of him going...that's a trip because I have to get it, pack it in ice, get Jake prepared to haul him over to clinic to drop it off. WHAT A NIGHTMARE!! IT WILL TAKE ME ALMOST AN HOUR JUST TO DO THAT! Well almost....

Jake's WBC is 7.4 today, his Platelets are 41, his Hemaglobin is 9.3, still hanging in there like a champ.

Jake LOVES the hotel room, but wants to go bye bye in Momma's car he says. He loves our morning walks over to clinic. He loves being outside and watching the busy streets infront of the hospital. Yesterday a fire engine was at the light as we were crossing the street coming back from the doc's visit on the unit (BOP). Jake was waving to them, and they honked their horn and waved back. Jake LOVED THAT! I know he loves being outside period, but he can't be for very long. He could get 2nd and 3rd degree burns from the sun. The doc's advised us that when we got home "home", that Jake should NOT be outside after 11AM, and with the mosquitos, shouldn't be out after dusk either. So, this summer is shot for him...BUT THERE'S ALWAYS NEXT SUMMER!! We WILL MAKE UP FOR IT THEN, TRUST ME!

Well, that's all for now...Thanks for all the wonderful thoughts and prayers.

Always praying for:
The Families of 5200 & The Rainbow kids of Charlotte....
XO

Sunday, June 10, 2001 at 01:01 PM (CDT)
Hi Everyone-
I love the weekends, we have to take Jake back up on the unit for the doc's to look him over. IT ONLY TAKES 15 minutes. I LOVE IT!! Compared to 2-4 hours at clinic everyday. WHAT A DRAG....Well our hope is that Jake won't have to be seen EVERYDAY, once all the meds STOP. Jake is still on the continous heparin (it stops tomorrow) he's been wearing a "fanny pack" around everywhere he goes. He's too small to wear it around his fanny, so we strap it around him like a sling. Anyway, he knows where ever he goes, it goes with him.

Now the evening is a different story. The TPN & Lipids are in two seperate packs, once they are all hooked up I can hook them together. It's an experience trying to keep up with Jake and all those pumps! Jake will continue the TPN until the doc's think he's getting enough nutrition on his own. He's not really eating alot, but he is some...so, my hope is that his appetite will increase and the TPN & Lipids will decrease. All his oral and IV meds will continue for a while I was told. It could be a few days... or a few weeks....????? I think it's harder for the doc's to answer that in the beginning. They have to monitor him for a while before making those decisions.

Jake's WBC is 9.0 today, his platelets are at 46, and his RBC is at 9.1, he's still looking pretty good. Jake ate a few bites of a hotdog and a bite of cheese today and keeps asking for banannas, but he can't have any fresh fruits or veggies right now. I hope he will be able to eat them soon.

Daddy leaves today this afternoon. Right now he's out running errands for me. We miss him ALOT! Well, hopefuly I'll have even more better news to report on tomorrow's journal entry. Until then, thanks for all the thoughts and prayers, we really appreciate them.

Always praying for:
The Families of 5200 & The Rainbow Kids of Charlotte.
XO

Saturday, June 09, 2001 at 07:32 PM (CDT)
Hello Wonderful Family & Friends!

Well....what can I say but WAAAAAHOOOO Jake's eatin SOME FOOD TODAY!!!!! YIIIPPPEEEEEE HURRRAAYYYY!! After 25 days without.... my boy wants some REAL FOOD! Jake had some goldfish, froot loops and some bites of pizza for dinner tonight. :0)

I had been gone for a few hours today with Auntie Pat. I got my nails done (they were in some SAD shape) and did some much needed shopping. Made me feel sooooo much better. Anyway, Daddy and Jake hung out together. Daddy took Jake to BOP (treatment room on the unit) and waited for the doc's to check Jake out. Jake didn't need anything but a visual from the doc's. Jake's WBC today was 7.5, this keeps jumping up and down and it's driving me NUTS!!! but the doc's say this is all normal. Jake's platelets went down to 40, still acceptable. Jake's hemaglobin is 8.8. So, for the most part Jake is holding his own. I am so darn proud of my kid. What an angel he was today daddy says.

Right now Jake is playing with his playdoh given to him by someone at Pillowtex. THANK YOU, HE SURE LOVES HIS PLAYDOH! That stuff keeps him occupied for a while. He and Daddy are making pretend ice cream cones.

Tomorrow Jake will return to BOP for another visual, then we come back to the motel and give MEDS, MEDS, MEDS... Hopefully Jake won't have to be on the TPN and Lipids for very much longer. It's hard manouvering around with him, and his three pumps at night. During the day he only has the continous heparin. He gets weaned off his continous heparin on Monday (YAAHHOOO). I'll be glad to get rid of them all soon!!! Pray that Jake continues to eat well, and his stomach is ready for MORE FOOD FOOD FOOD!!!

That's all for now...I'll update you all soon. Thank you all for the wonderful thought and prayers. We really enjoy reading them.

Always in our prayers are:
The Families of 5200, & The Rainbow Kids of Charlotte.
XO

Friday, June 08, 2001 at 01:48 PM (CDT)
Well, I'm officially on my own with Jake. Brian left last night, he's got alot of work to do, and hates not being here, but I understand. He will be back on Saturday morning.

The home health care nurse came by last night and I had already gotten Jake's TPN pump & lipid pump prepared without her. It's a liitle nerve racking to do by yourself the first time. Thank God Jake was napping, because I know I would have messed up somewhere along the line trying to tend to him.

I awoke to the beep beep beep of Jake's TPN & Lipid pumps finishing at 7:00AM. Once those are finished, I drew his labs for clinic, and started him on his IV GCSF which takes about 30 minutes to push through his pump. Once that was done, I started him on his Fluconazole which takes 1 hour and pushed through a pump. While the Fluconazole is running, I give him his 3 oral meds. This poor kid is getting alot of "JUICE" in the AM! Our morning routine gets us to clinic by 10-10:30 every morning. Normal clinic visits run between 2-4 hours. Today it took 4 hours to see the doctor. I was not happy to say the least!

After clinic, I have another IV med to push by hand over 5 minutes, and then later that afternoon I prepare all the TPN & Lipid pumps. Then he gets GCSF, one oral med, and next TPN & lipids start to run over 12 hours. After that is started he gets two more oral meds and I'm EXHAUSTED!!!!!!!

Jake does drink water with his oral meds. I'm so propd of him. He's such a good little boy. He just sits on the bed and watches his cartoons while I administer all of his meds via IV. I'm so lucky..

Jake's counts were pretty good yesterday, and even better today... his WBC was 5.6, his platelets were 50, and his hemaglobin was 8.7. Tomorrow, he has to go back on the unit around 11'ish "for a quick look" the doc said. I said that works for me!

The doc's all say he looks really good. He's got an even nicer tan now from the radiation. His skin tone was beautiful before, but now it looks like he's been in the sun for a few days.

I'm exhausted...I'm going to catch a break.

Thanks for all the encouraging thoughts on the web page. I appreciate them very much!

Always praying for:
The Families of 5200, & The Rainbow kids of Charlotte..

Thursday, June 07, 2001 at 09:27 AM (CDT)
~~~~~~NEW PHOTOS CHECK THEM OUT~~~~~~~
Hi Guys!
Just a quick note to let you all know we are so happy to be OUT! Jake and I did pretty good last night. The Home health nurse came by and showed me how to hook up the TPN, & Lipids to Jake. Those ran over night.

Last night Jake threw up all of his oral meds. This morning, he's held them down so far. Jake did mamage to eat a few peices of popcorn earlier in the evening.

Thank you Auntie Pat for going to the grocery store for me, and occupying Jacob so I could listen to the nurse. You are a big help to us!

We rested well for the most part. I'm still on a schedule of waiting for those pumps at the hospital to beep off. Gosh those things are annoying! I won't miss them at all. I will miss all Jake's Nurses, to name a few ANDRIA, MELISSA, MICHELLE,and TRACEY, you girls are AEWSOME and I appreicate all you did for Jake and I.

Well, we are pretty much on our own now, I like it that way. Jake will be closley monitored for 3 months. Our lives won't be semi-normal until the end of this year. Jake has to wear the mask for at least three months. Visitors are limited now, only because the doc's requested we be extremely careful. I wish we had HEPA filters in every room of our house, but I cannot protect Jake from EVERYTHING.... I hope we get to go home in a few weeks....

Jake's immune system will not be fully mature until around the end of this year. He will most likely have to be re-immunized. Jake is not allowed to be around any children who have been recently immunized or exposed to chicken pox etc...

So, we'll just be extremely careful for a while. I hate it that he has to continue to wear the ("mac" is what Jake calls it) Mask, but he must be protected always. He won't have to wear the mask in the house, but anywhere we go, ie clinic etc...

Well, Jake's last IV med is almost finished so I'll wrap things up now. I'll update you all again soon.

Thank you all for the wonderful thoughts and prayers, we really appreciate them very much.

Always in our prayers are:
The Families of 5200 & The Rainbow Kids of Charlotte.

Wednesday, June 06, 2001 at 08:54 AM (CDT)
~*~*~*~*~ D A Y 23~*~*~*~*~
Hip Hip HURRAY!!! JAKE'S GETTING OUT OF THE HOSPITAL TODAY!!!!!! :0)

YIIPPPEEEEE!!!!! I'm so excited! Jake slept really well last night. Since off the PCA (continous morphine), he's been doing pretty good. We had to give him oral morphine twice yesterday, and it made him feel so much better!

We will be going over to the motel this afternoon sometime. Once there I will TRY to organize everything. It's a mess right now, because we just threw everything in last night. Thank you AUNTIE PAT for helping me get all our STUFF over to the motel. You have been wonderful, and we appreciate it very much!

This evening, the home health care nurse will come over and go over everything with Brian and I. I'm so glad to be getting closer to coming home to Kannapolis. I miss it so much. I can't believe today has been 4 weeks exactly since we were admitted. Time has flown by, it's kinda weird. I will miss seeing everyone on the unit, and the "closeness" you have with some. Everyone is wonderful here. The wonderful Doctors, the AWESOME nurses, and the other families on the unit. We will see some in clinic, and some on the weekends in the BOP (treatment room on the unit) So, I'm glad for that.

I haven't told Jake we are going BYE BYE yet. I will wait until we are ready to leave. I think he is ready too. He just woke up and is watching Blues Clues. He seems to NOT be having pain, but with him, unless he's crying ill as a hornet I can't tell.

I will continue to update the page as soon as I can everyday. The majority of our days will start pretty early for me to draw blood labs, run them to the lab, then off to clinic for the day. Over at clinic they administer meds one at a time, so depending on what he gets we could be there for a while. Especially if he needs blood or platelets. Pray for our strength.

That's all for now, I will post our farewell photos on the page hopefully tonight, so keep checking.

Thank you all for all the encouraging thoughts and prayers, they have been awesome. We appreciate it very much.

Always in our prayers:
The Families of 5200, & The Rainbow Kids of Charlotte.
X0X0X0X0X0X

Tuesday, June 05, 2001 at 08:31 AM (CDT)
~~~~~ D A Y 22 ~~~~~

Hello Family & Friends-

This morning Jake's WBC is (5.6) I'm not liking this at all! I was told not to panic, just because the WBC are decreasing does not mean that they are going back to (0). Jake's Doc's told me that the "stem cells" that jake received back are very immature cells. They have to GROW and Jake won't have a mature immune system for atleast 3 months or more. The Doc's prepared me for the cells to drop more in the days to come. This is why Jake is taking (GCSF) this is the drug I was telling you all about that causes SEVERE bone pain, but that promotes the GROWTH of WBC's. Since the (GCSF) has been split into two doses, Jake seems to be handling it much better. **The PCA continous (morphine) was just stopped at 11:30AM, if I think he needs pain meds, oral morphine will be given*****

Jake rested much better last night. He hasn't run any fevers to my knowledge. He has taken his Oral meds acyclovir & zantac very well over the past two days. He woke me up at 3AM this morning asking for WATER! I was so happy he was asking for the water I about killed myself trying to work my way to the refridgerator to get it. I thought the nurse would wet her pants laughing at me. I have MORE BRUISES ON MY LEGS from trying to manouver in that room at night!! I'll be so glad to get to the motel room and at least have SOME SPACE!

Anyway, Jake GULPED down alot of water, I was really happy. Maybe now he will start drinking more and possibly eating in a few days. I was told by the doc's to be prepared for Jake not to eat for a few weeks! YIKES! Well, at least he'll still be getting the TPN (nutrients) and the lipids (fat) that he's missing while not eating. I will administer all of this, Jake will get the TPN & lipids while he sleeps and all other meds in the morning and at night. He will probably have to have heparin running during the day. Somehow it will work where he will wear a fanny pack taht carry the meds, and pump through his body. I hope he does well with that.

Jake's Platelets are 27,000 Scale (150,000-400,000) this morning, his RBC is 8.7 scale (10.5 - 13.5) So, I'm sure he will be getiing both soon!

Jake was ever so STUBBORN yesterday. We played in the Family lounge and watched videos, just to get out of the room. Anytime any other parent came in to alk to me he would say "Momma SHHHHHHH!" So I couldn't talk to anyone! Only to him...

This past month has FLOWN by. I have met so many wonderful new friends. These people amaze me everyday. Especialy the ones that have more than one child. I thought I had it rough...The folks up here that have multiple children are suffering too. I pray for their strength every night. Jake says prayer with me. He'll say "Thanks Jesus" it's so sweet.

Well, as far as I know we should be discharged tomorrow. Auntie Pat will be here to help me get our stuff over to the motel this afternoon. Amy Jake's best buddy, will come play with him while we are doing that. Daddy has been working like a maniac, and will be here Wednesday for the FAREWELL WALK YEAHHH!! I will post photos for you all to see, I can't wait!!!!!!

I will post the new address & phone for the motel tomorrow. Thanks for all the wonderful words of encouragement & prayers, we love reading them and appreciate them.

Always praying for:
The Families of 5200, & The Rainbow Kids of Charlotte

XOXOXOXOXOXOXOOXOXOXOXOX

Monday, June 04, 2001 at 08:21 AM (CDT)
***** D A Y 21 *****

Hello Family & Friends-
Jake's WBC is (6.7) I was told the count could've dropped do to all the meds they are trying to wean him off of or decrease. I did kind of PANIC when I picked up the lab sheets this morning. I stopped right in the hall and hollerd "OKAY I'M FREAKING OUT NOW"! Then a really friendly nurse named Sarah said "what's wrong? I showed her the papers and she calmed me down a bit, by explaining about the meds decreasing.

Jake spiked ANOTHER fever this morning to 102. The lab cultures have been sent off, and we are waiting on the results. Hopefully it's just the cells trying to grow again. I tried giving Jake the oral medicine acyclovir again last night. He took it well and then I did mouth care. He threw every bit of that medicine back up. So, we will try again this morning. Jake rested ALOT better last night since the GCSF has been split up. I hope he continues to rest as good. Jake's platelets were low again this morning at 18,000 so he got a bag of them early this morning. I just want to say how WONDERFUL all the nurses are here on the unit. I love all of them. Jake's nurse yesterday Tracy, bought Jake a Blue's Clue's hat. It's so cute. I'll post a photo soon of him in that hat. Anyway, they are all very comapssionate, caring, loving people. We are very lucky.

Dady left yesterday afternoon, Jake wanted to walk him to the door. So, we got about 1/2 way there and Jake just stopped. He knew Brian was leaving, and did'nt want to walk toward the door. He actually refused to go any further. We had to have a family pow wow in the hall in front of several people. I tried to explain to Jake that Daddy had to go home, after a few minutes Jake said okay, walked Brian to the door and blew him kisses goodbye. We miss you Daddy! Jake is very strong willed....wonder where he gets that from....??????

Doc's still say it's possible we could be discharged on Tuesday or Wednesday. I hope it's true. Pray that Jake is able to handle all the oral meds, and the GCSF without the morphine.

That's all I have for now.
Thank you all for the wonderful thoughts and prayers.

Always praying for:
The Families of 5200, & The Rainbow Kids of Charlotte

Sunday, June 03, 2001 at 10:34 AM (CDT)
******D A Y 20 ******
Hello Family & Friends-

Jake's WBC is (8.4) today, I know it dropped a little...but, that's expected. I was told not to worry. SO DON'T WORRY OKAY! Jake is still sleeping this morning, he's been tired ALOT latley...GROW CELLS GROW!!

Jake TOOK HIS ANTI-VIRAL ORALLY ("Acyclovir") YEAH!!! We are so happy it stayed down! :0)

****Sunday afternoon UPDATE****

The Doc's say Jake might be out of here by Tuesday or Wednesday. We are keeping him on the morphine because the (GCSF) that is given can cause pain too! The GCSF was being given at night time, so that would explain the last two restless nights!!! The GCSF medicine is what boosts WBC growth, so they are going to split it up. Half will be given in the morning and half will be given at night. I hope that helps! Pray that Jake will be able to handle that better, and will be able to leave Tuesday or Wednesday of this week...

I ran home to Kannapolis yesterday, while Daddy stayed here for the day with Jake. It was very hard being away from him, but I was really glad to get out of here and GET MY ROOTS DONE! Thank you sooo much Auntie Pat for #1. Going to the grocery store for my friend Candy and her son Lydell. #2 For coming to get me and taking me to Kannapolis for the day. I LOVE YOU! And so does the rest of my family.

Brian said the doc's say Jake still could spring this joint either Monday ot Tuesday. We're hoping so!! I will update everyone AS SOON AS I KNOW. PRAY PRAY PRAY!!!!

The Children's Miracle Network is here today broadcasting live from the Children's Health Center which is attached to Duke Hospital. This is the same clinic that ALL the kids here goto for outpatient care. This is where Jake has been going to for care and will continue going to, until released back to Charlotte. If ANYONE has the chance to watch it, please do. We all have been watching it and crying our EYES OUT! If anyone wants to contribute to the "CMN" please do, they HELP OUT here, and in Charlotte at Carolina's Medical Center. If you can't get it on TV you can call this number 1-877-249-3853. Darlene Lamphier our neighbor here on the unit "Minnie's Mom" will be presenting a check today (from who I don't know) on this program. Her little girls name is Alison, and is going to start radiation on Monday. Alison has been here for a long time already, she had her first transplant on 4/13/01 which didn't take. Please pray for her and her family.

That's all I have for now....

Brian and I really really appreciate all the wonderful encouraging thoughtd and prayers. We love reading them.

Always praying for:
The Families of 5200, & The Rainbow kids of Charlotte

XOXOXOXOXOXOXOXOXOXOXOX

Saturday, June 02, 2001 at 07:44 AM (CDT)
======== DAY 19 =========
Hello Family & Friends-

Jake's continous PCA (morphine) was stopped yesterday. That was obviously too soon. Jake started acting funny, really cranky,crying and very clingy around 3:00PM. He fell asleep for a nap until around 6:00PM and woke up ill as a hornet! I had to hit the button at least 4 times during the day yesterday.

Last night we didn't get to sleep until around midnight. I read several books to him, but he would not go to sleep. He said his tummy hurt. So, I hit the button and within a few minutes, he was asleep. I was up with him again at 2, 4, 5 & 7AM this morning. All he did last night was moan and cry out. This morning the continous morphine was started again. I believe the mucocitis is still atacking his intestines. He's had ALOT of tummy trouble the past two days, so maybe it was too soon to try and wean him. I guess we will try again another day.

The doc's also weaned Jake off of an IV anti-viral med, for the oral anti-viral med, and Jake threw it right back up last night. I don't think he's ready for ANYTHING ORAL. So, my guess is they will try again in a few days. I am in NO HURRY to rush Jake. I don't care if we are here two more weeks, I just want him to be able to handle the oral meds, and stop hurting. It's so hard with a small child because he cannot tell me he's feeling sick to his stomach until he actually throws up. I hate seeing him in this pain. But, hopefully this continous morphine will ease the pain and it will subside. I will pray that it does anyway....

Jake's WBC is at (8.7) Thank the LORD, it continues to rise! GROW CELLS GROW!!!!

Daddy is here! Jake was glad to see him yesterday, so was I!!

That's all for now, I'll update tomorrow!
Thank you all for the wonderful thougths and prayers. We really appreciate them!

Always in our prayers are the Families of 5200 & the Rainbow Children & Families of Charlotte
XOXOXOXOXOXOX

Friday, June 01, 2001 at 07:21 AM (CDT)
XOXOXOXOX DAY 18 XOXOXOXOX

Hello Family & Friends-
Jake's WBC is (8.2) YEEAAHHHH! Jake is "cruisin" right along. Jake spiked a fever yesterday afternoon to 103. He threw up a little, so the nurse gave him some medicine that made him goto sleep for a little while. When he woke up he was raring to GO!

Amy Jake's Best Buddy came by last night and played with him for 4 HOURS!!! AMY YOU ARE AWESOME...Jake seemed fine the rest of the night. He rested well. His platelets are low again this morning, so they will be checked again today. Probably will have to have more soon.

Daddy is coming back tonight. We are very glad about that. I happened to look at the calendar last night and realized that tomorrow 6/2/01 will be the 6 MONTH anniversary of Jacob's diagnosis. I am so impressed with far he's come. All the AWESOME care he has received, THAK GOD FOR EVERYONE WHO HAS TOUCHED HIM TO HEAL HIM! I cannot EVER thank everyone enough for all the wonderful health care, support and friendship we have encountered since the beginning. I believe GOD places the people you "need" in your life for a reason. Brian and I are so very grateful that Jake is alive and doing well. We live each day for THAT day and hope tomorrow's even BETTER!!!

I also want to Thank a group of folks WAY OUT IN OKLAHOMA..Poppy & Grama Cindy, you guys have been wonderful. We don't know what we would do with out you. We also want to thank "THE WINSDOR BUNCH" they are having a BIG golf tournament the end of June in Jake's honor at NOWATA Country Club, in Nowata OK. You guys are incredilby generous, and we really appreciate what you are doing for our family.

My Girl Jess & her precious son Mat finally were able to leave yesterday YEAH! Mat, you are in our thoughts and prayers always!! We will miss you, and are so proud of you both!

Always in our prayers are:
The families of 5200, The Rainbow Children of Charlotte

Friday, June 01, 2001 at 07:21 AM (CDT)
XOXOXOXOX DAY 18 XOXOXOXOX

Hello Family & Friends-
Jake's WBC is (8.2) YEEAAHHHH! Jake is "cruisin" right along. Jake spiked a fever yesterday afternoon to 103. He threw up a little, so the nurse gave him some medicine that made him goto sleep for a little while. When he woke up he was raring to GO!

Amy Jake's Best Buddy came by last night and played with him for 4 HOURS!!! AMY YOU ARE AWESOME...Jake seemed fine the rest of the night. He rested well. His platelets are low again this morning, so they will be checked again today. Probably will have to have more soon.

Daddy is coming back tonight. We are very glad about that. I happened to look at the calendar last night and realized that tomorrow 6/2/01 will be the 6 MONTH anniversary of Jacob's diagnosis. I am so impressed with far he's come. All the AWESOME care he has received, THAK GOD FOR EVERYONE WHO HAS TOUCHED HIM TO HEAL HIM! I cannot EVER thank everyone enough for all the wonderful health care, support and friendship we have encountered since the beginning. I believe GOD places the people you "need" in your life for a reason. Brian and I are so very grateful that Jake is alive and doing well. We live each day for THAT day and hope tomorrow's even BETTER!!!

I also want to Thank a group of folks WAY OUT IN OKLAHOMA..Poppy & Grama Cindy, you guys have been wonderful. We don't know what we would do with out you. We also want to thank "THE WINSDOR BUNCH" they are having a BIG golf tournament the end of June in Jake's honor at NOWATA Country Club, in Nowata OK. You guys are incredilby generous, and we really appreciate what you are doing for our family.

My Girl Jess & her son Mat finally were able to leave yestewrday YEAH! Mat, you are in our thoughts and prayers always!! We will miss you, and are so proud of you both!

Always in our prayers are:
The families of 5200, The Rainbow Children of Charlotte

Thursday, May 31, 2001 at 08:41 AM (CDT)
~~~~ DAY 17 ~~~~
Hello Family & Friends-
Jake's WBC is at (7.5) this morning YIPPEEE! I am soooo happy! Jake had to have platelets again this morning. His platelet count was at 19,000 and the scale is 150,000 - 400,000. It's the mucocitis that keeps atacking those platelets. I was told that mucocitis can last for weeks and weeks. As far as Jake's mouth, it looks really good. I think he's still having throat and stomach pains.

He will be weaned off of the continous morphine today, it will still stay on his pole in case I need to hit the button, if I think he's having pains. Jake is still refusing to eat or drink. Although he did have two sips of water on Tuesday. He dry heaved on me again yesterday when he saw some pizza. He said "PEPPERONI MAMA!!" and then he gagged. I know he wanted it, but I guess when he smelled it, he couldn't handle it.

Docs' say we should be able to get out of here on Monday or Tuesday. Jake has NOT had any more fevers in 24 hours THANK GOD!!!! The nose bleeds have calmed down too! He had a small one yesterday, but we got it under control.

Jake and I played BINGO yesterday, and won twice!! (well they gave everyone a chance to win twice) ANYWAY, Jake picked out a magna doodle and some mini dalmation puppies as his prizes. We had alot of fun, I had to keep our BINGO card away from him because he kept moving all the peices off the numbers...It's a wonder he won at all!!!. He didn't take a nap at all agian yesterday and was quite STUBBORN too! It's the Courtney in him.....(HA HA)

I think Jake has found the WOMAN of his dreams, her name is Alison and she is absolutley BEAUTIFUL!! She has a Minnie Mouse hat and Jake has a Mickey Mouse hat...They are so cute together. Last night he stopped by her door to wish her pleasant dreams and said " Good night Baby" We all CRACKED UP! When he sees Alison in the halls he says "Hey Alison" and she runs from him, only because he tries to run her over with the train he pushes around. I tried telling him that little girls don't like to play so rough...He's kinda getting the picture.......I'll be putting a photo on today of the two of them, so check it out later or tomorrow.

Well, I'm supposed to go back over all the nursing stuff with the "Home Health Care Nurse" today. She's going to be showing me another pump to use as well today. It's amazing how MUCH stuff Jake is going to need, especially since he's not eating or drinking anything still.

That's all I have for now..Thanks so much for keeping our spirits up with the wonderful thoughts and prayers. We really appreciate them.

Always in our prayers are:
The families of 5200, The Hagler family, & All the Rainbow kids of Charlotte...

Wednesday, May 30, 2001 at 10:17 AM (CDT)
{{{{{{{ DAY 16 }}}}}}}

Hello Family & Friends-
Jake's WBC is (5.7) this morning. His platelets are low again. Jake continues to have nose bleeds. The doctors are saying he's having them because the air is so dry up here. It's like a vacuum in our room. If you stand outside the door you can feel the air flow coming out at the bottom of the door. So far it's not affecting me. I just wish he could stop having those nose bleeds. It's very scary when his platelets are so low, knowing that it's hard for the blood to clot with out them. Jake is still on all of his Meds. He's on 5 antibiotics, TPN, lipids & morphine. The morphine pca continuos is only at .2 miligrams every hour, so hopefully it won't be long until he's off of that stuff.

The Home Health Care Nurse came by yesterday and went through a series of medical care Jake will need while outpatient here. I will have to administer all his Meds and TPN through a mini pump, (It looks like a hand held gameboy) and draw labs for the doc's to watch his platelet and Hemiglobin levels. It seems easy. I'll be tested today I was told. YIKES !!! I HATE TESTS!!!

Jake ran a low grade fever last night. I hope the fevers GO AWAY! That will be the only thing that keeps him in here. The docs' say that Jake is doing very well, exactly where they want him to be.

It's been 3 WEEKS today since we've been here. Jake is doing AWESOME! I'm so proud of him. He has had his moments like yesterday he threw a fit in the hall. I told all the nurses, "See...he can be a little skunk sometimes". They all laughed and said they still think he's an angel. I had to agree with them.

Jake didn't have a nap ALL DAY yesterday. His Auntie pat came by to play with him for a while and let me use her car to go run some errands. THANK YOU AUNTIE PAT!!!

Then Jake's Best Buddy Amy came by to play with Jake. That allowed me & Auntie Pate to go eat dinner together downstairs. THANKS
AMY!!!

We miss Daddy alot, Jake and I fight over the phone when he calls us. That's all for now, I will update you all tomorrow. Jess & Mat are still here with us, pray for Mat's fevers to GO AWAY so he can spring this joint!

Love to all-XOXOXOXOX Thank you ALL for the wonderful encouraging thoughts and prayers. We really appreciate them all..

Tuesday, May 29, 2001 at 09:45 AM (CDT)
<><><> DAY 15 <><><>
Jake's WBC is at (5.4) this morning!! What awesome news! He had to have a blood transfusion this morning, and platelets last night. He had NOSE BLEEDS NOSE BLEEDS NOSE BLEEDS last night! They were awful! The nurse had to get this spray stuff to try and help clot the blood until she could get the platelets. It usually takes about an hour for them to come. We have to keep Jake very still and calm until they arrive. Jake continues to spike fevers, he was running 104 this morning. I hope it continues to be from the new cells growing..

Spoke to the doctors yesterday and it looks like if Jake can quit spiking fevers, he should be able to be discharged either MONDAY or TUESDAY of next week YIIIIPPPEEEE! Brian and I were very excited to hear that. So, pray that Jake's fevers stay AWAY!!!

We will move into the University Inn across the street from the hospital for a few weeks I'm sure. Then once the doc's are comfortable with Jake being cared for in Charlotte, we will be turned back over under the AWESOME care of the CMC.

Daddy left yesterday afternoon...we miss him. We had a good few days in a row to spend together, it was nice. His visits come and go so fast..

We miss everyone. Thanks for all the encouraging thoughts and prayers.

XOXOXXOOOXOXOXOXX

Monday, May 28, 2001 at 09:04 AM (CDT)
XOXOXOXO DAY 14 XOXOXOXO
Good Morning All-
Jake is at 4.1 today! YEEEEEAAAAHHHH!!!!! Jake ran a fever again yesterday, so more labs were drawn, still no infections. We are pretty sure it's just the cells growing. I hope the doctors tell us today when for sure they think we are going to get out of here. I'm not sure how long it's going to take to wean Jake off of all his MEDS thru the IV. The "Home Health Nurse" is supposed to be here today to discuss what's going to happen once discharged. I'm sure it will be overwhelming, but I think we can handle it....I'm just looking forward to Jake getting on the road to recovery, and having a somewhat normal family life again. Even though, we will be outpatient and have to travel back and forth to clinic everyday for platelets, blood, meds etc... That's fine with me!

Daddy spent the night with Jake last night. For the most part Brian and Jake slept okay. I slept at the motel. I still woke up twice, but otherwise it was a GOOOOOOD sleep!

Our good friends Rodger and Janice came by for a visit yesterday. They told us to GOOOO ! So, Brian and I went to lunch and to the grocery store. It was nice being able to get out and spend and few hours with my husband. Jake had fun playing trains and watching "Thomas" with Rodger and Janice. THANK YOU VERY MUCH RODGER & JANICE! WE LOVE YOU BOTH!

That's all the news I have for now, I'll update again if anything changes. Mat & his mom Jessica are springing this joint tomorrow. We will miss them, but hopefully we are NEXT!

Lots of Love to everyone. Thanks for signing the guestbook with encouraging words and prayers. We love reading them.

Sunday, May 27, 2001 at 09:29 AM (CDT)
WHAAHOOO Look who's at (3.2) !!!!!
:0) :0) :0) :0) :0) :0) :0) :0) :0)
///\\\ DAY 13 ///\\\

Hello Family & Friends-
Jake had a pretty good day yesterday. He continues to spike fevers, so the doc's continue to draw blood cultures. His lab results keep coming back negative for any infections. So, this is good news. Maybe it's just the cells that are growing that's causing the fevers??

We asked the doc's yesterday when they thought Jake would be discharged, and they stated that Jake has to STOP running fevers, get weaned off the morphine and hopefully start eating. So, basically, it could be later next week or sometime the first week of June. They are not rushing him, so I'm very glad.

Jake had ANOTHER nose bleed at about 5:00AM this morning. His nurse came in and noticed it on his pillowcase, and turned on the light and it was everywhere! His nose bled alot! I don't know if he stuck his finger up there or just rubbed it really hard, but there was alot of blood. The bleeding stopped, THANK GOODNESS! His RBC & Platelets are low low low, so I'm sure he will have to have both today.

As for this morning, he's quite crabby. He is running a fever of 103 this morning. He's still has a bad diaper rash and having tummy trouble often. Still very clingy to Momma & Daddy, and that's just fine with us....

Mimi is here and he is enjoying her company.

That's all for now, I'll update you all tomorrow morning!
Thank you for all the wonderful encouraging thoughts and prayers, they mean soo much!

Always in our thoughts and prayers are:
The Families of 5200, The Hagler Family, Emily in Charlotte (who's on her way up here !!:))

Don't forget to check out the new photos!

Saturday, May 26, 2001 at 09:30 AM (CDT)
<><><> DAY 12 <><><>
HEY HEY Jake's at (2.0) TODAY!!!!! WHAAAAAHOOOOOOOOO!!!!!!!!!!!!!!!!!

Hello Family & Friends -

Jake had a wonderful day yesterday. He played in "art-mates" and made a paper hand puppet. He seemed to enjoy playing with the child life workers. He also learned how to shoot a water gun with his buddy Mat. Jake and Mat had all the nurses running crazy yesterday with the water guns. The hallways were a mess. It was alot of fun.

Last night as as Jake & I were preparing for bed, I noticed a spot of blood on the bed. At first I thought the blood was from where they had drawn labs, and then I looked up at Jake and he had blood all over his face. I flipped out!

I rang the nurse call bell and layed Jake down on the bed, and covered his nose with a towel. The poor kid probably thought I was trying to suffocate him, but I wanted to make sure I could control the bleeding. I stepped out into the hall and noticed a nurse coming up the hall. I said "Jake has a bit of a nose bleed". Before I knew it there were four nurses in our room. Tracey our nurse last night ordered platelets for Jake right then and he got them about an hour later. It was scary because when your platelets are low, you can't stop bleeding. We just made sure he continued to lay down, and the nurse checked on him about every hour after that. So, to say the least, I couldn't rest very well last night at all. I was so worried about Jake. He's okay this morning, THANK GOD!

The nurse today is going to check his platelet counts again this morning. I noticed on his labs sheet this morning, his (RBC) was low too, so he will probably have both blood and patelets today sometime.

The "Home Health Nurse" is supposed to be coming by Monday for a visit, and to advise us on what to be prepared for when Jake is discharged. Still no word on when we are springing this place. Doc's say maybe in the next few weeks because of Jake spiking fevers and he still needs to be weaned off some of his MEDS. I feel it's coming soon. PRAISE GOD!

As always, Jake is an angel. Brian and I thank GOD everyday for him. He's a super sweet kid, who's obviously loved by many many people.

Thank you all for signing the guestbook with the encouraging words, prayers.

Always in our prayers are:
The Families on 5200, The Hagler Family, Robert, Emily, Hilary & Mat
XXX0000XXX0000XXX000

Friday, May 25, 2001 at 07:54 AM (CDT)
<><><> DAY 11 <><><>

Hello Everyone!
Jake's counts are (1.1) today! YIIPPPEEE!! I am so excited today to see his counts JUMP UP like they did. He was a sleepy head yesterday. He still is today! It's those cells GROWING GROWING GROWING!! The Doctors reduced the morphine dose Jake is getting every hour, they are trying to wean him off. I did have to hit the button twice yesterday on top of his regulated hourly dose. Jake said his tummy hurt yesterday, it's that mucocitis.

The Doctors came in yesterday and said he's right on track, no word when we will spring this joint..but it may be soon. I don't want to JINX myself, but I'm trying to be very optimistic. Jake still refuses to eat or drink anything. Yesterday he dry heaved on me big time. I asked him if he wanted the chicken pattie that was delivered on his tray and he gagged. So, I quickly put it away.

Amy, his best buddy came again last night. They played in the room with his trains, and watched videos. Thanks ALOT AMY!! Auntie Pat came by last night too, and got Me out for a little while while Amy & Jake played together. Thanks Auntie Pat! Daddy came back last night!! YEAH!! We missed him ALOT! Jake was clinging to him like GLUE!

Thank you PILLOWTEX for the wonderful SUNSHINE BOX!! You guys are AWESOME. Jake was in HOG HEAVEN last night. He loves EVERYTHING!

That's all for now..Thank you all for the wonderful thoughts and prayers...

Always in our prayers are:
The Hagler Family, Emily, Hilary, Robert & Mat (who's still doing grrrreeeaatt!)

Thursday, May 24, 2001 at 10:11 AM (CDT)
<><><> DAY 10 <><><>
HIP HIP HURRAY! Jake is at (.5) TODAY!!!!!
:0) :0) :0) :0) :0) :0) :0) :0) :0)
I was really thankful to read his lab report this morning and see that (.5) on the WBC count. COME ON CELLS KEEP ON GROWING!!!

Jake has acted like he has felt REALLY good for the past two days. His mouth looks really good, so I think the mucocitis is past his mouth and working it's way down. I did mouth care this morning without having to hit the morphine button. He still refuses to eat or drink. I have asked him if his throat and tummy hurts and he says yes, so maybe in a few days he won't be hurting anymore..

I haven't hit the morphine button in two days, although he is still getting a dose every hour regardless.

I broke out the finger paints for Jake yesterday, I know I know I AM BRAVE! Anyway..he did sooo good, he didn't even get any paint on any of his clothes. He used the paint brush instead of his fingers, I don't think he likes to have his hands dirty. It has to be from me being so crazy about him having clean hands.... He painted the most beautiful (I think anyway) artwork ever!

We walked ALOT yesterday. We are so very impressed with Jacob and his resilience. He has just amazed us his whole little life, what a blessing. Thank you God for giving us such a precious gift. We love him with all our heart.

Thank you ALL for the WONDERFUL words of encouragement and AWESOME prayers! Brian and I really appreciate everything evryone has done for our family.

********************************************
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********************************************
On a very sad note:
A Rainbow member has gone to be with GOD..

Josh Hagler lost his battle with cancer today. Please pray for his family to have the strength and healing they need to make it through each day without him.

Wednesday, May 23, 2001 at 08:32 AM (CDT)
<< DAY 9 >>

Hello Family & Friends-

Jacob had a pretty good day yesterday, he walked up and down the halls several times. We always go to Mathew's door and draw trains on his board. It's good because Mathew's door is ALL the way at the other end of the hall. This way Jake gets a good walk in. Jake also played with the other children in their "cell mates" support group just for kids. Yesterday the kids finger painted a beautiful banner for the family lounge. No parents are allowed, but I sneaked a peak through the window and video taped him havin fun. Jake looked like he was having fun. He came back to the room about 45 minutes later and was purple and pink from head to toe. Thank goodness it's washed off!

Jake ran a low fever yesterday pretty much all day. The doctor's say that sometimes kids run a fever when their cells are trying to grow. GUESS WHAT?? Jake's White cell count went from (.1) to (.2) YEAH!! This morning Jake's nurse came in and whispered "Jake grew some cells, he's at (.2)". Also, this morning I picked up Jakes lab papers and I noticed that his platelets were at 16, so he got platelets very early this morning too.

I called Brian this morning to tell him that Jake grew some cells. Brian said "well is he worn out from working so hard?" I said yep... he's still sleeping! Sleepy Head...Normally when their cells are coming in the kids are pretty tired, and sleep alot. We still have a long way to GROW, but it's exciting to see it happening. I will pray the cells keep on growing...

Jake's best buddy came in to play with him last night, they have so much fun and she is so good with him.

We really appreciate all of the encouraging thoughts and prayers, they mean alot and we enjoy reading them to Jake.

That's all for now..
GROW CELLS GROW GROW GROW!!!

Always in our prayers:
JOSH, EMILY, HILARY, ROBERT & MAT
XOXOXOXOXOXOXOXOXOXOXOOXOXOXOXOXOX

Tuesday, May 22, 2001 at 07:22 AM (CDT)
Hello Everyone-
<><><> DAY 8 <><><>
Jacob rested well last night. He didn't even wake up but once. I was hoping that he could rest all night.

He slept a good bit yesterday. He was in a good bit of pain from the mucocitis and his cheeks were swollen yesterday. He was even talking funny. Jake ran a low fever yesterday as well. After he woke up from his afternoon nap, he had ALOT of energy!

His Best Buddy came by last night and we walked him up and down the halls for a bit. After that, they watched a video.

We had Nurse Andria last night. Jake played with Andria for a while, and I snapped a few photos. Since he was in rare form, I thought I would capture it in a picture. I'm sure they will turn out good....He loves for people to blow bubbles with their bubble gum, so we kept giving Andria bubble gum, it was pretty funny!

Jake had to have platelets yesterday, they jumped from 20, to 34 back down to 20 again. His White Blood Count is still sitting at .1 (Come on Cells GROW!)

Other than that he was pretty ill yesterday for the most part, until after his nap. If I looked at him the wrong way he got mad. He was in alot of pain. I hope today is a better day for him. He's still sleeping right now...Sleepy Head....

That's all that I have for now. I will update you all again soon!

Thanks for all the wonderful thoughts and prayers. XOXOXOXOXOXOXXOXOOXOXOXOXOXOXO

Always in our prayers are:
ROBERT,EMILY,JOSH,HILARY & MAT

Monday, May 21, 2001 at 08:23 AM (CDT)
<><><> DAY 7 <><><>
Good Morning Family/Friends-
Jacob is getting hit hard with the mucocitis. Some kids do better than others, in Jake's case it's pretty bad. He coughed and gagged all night long. I tried to suction most of it out. He hates to suction gaget because of the noise it makes.

For the most part he rested well, he cried out several times last night, I felt like he was in pain, so I just hit the morphine button and he would relax and go back to sleep after about 5 minutes.

He did tell me yesterday that his mouth and throat hurt, but he won't open his mouth to let anyone see except for me & Brian.

Daddy's visit was good, we miss him already. Jake said "Where my Daddy go?" I said he had to go home and work, and take care of the house. Then he yelled DADDY!, and I said, "son, he can't hear you, he's at home". That worked for about five minutes and then it started all over again.
Brian and I did get Jake walking in the halls a few times yesterday morning & before Brian left yesterday afternoon. He's sluggish, but he's walking and that's good.
Jake's sleeping righ now, I can hear all the congestion in his chest,and he SNOORED ALL NIGHT LONG! bless his little heart.

Jake's on three different types of antibiotics and they seem to be helping because his fevers haven't spiked again. I think he was at 101.2 this morning.

That's all I have for now, I continue to pray for his strength and healing as always.

Thanks for all the wonderful encouraging thoughts and prayers...

Always in our prayers:
ROBERT,JOSH,HILARY,EMILY
& Mat (who's doing GRRREAT!)
XOXOXOXOXOXOXOXOXOXOXOXOXOOXO

Sunday, May 20, 2001 at 11:03 AM (CDT)
<><><> DAY 6 <><><>

Hello Family & Friends-
Jake and I slept a little better last night, the doctors uped his morphine dose because he is in so much pain from the mucocitis. He's gagging and coughing alot and he's spitting it up, which is good. He still refuses to eat or drink anything so far. His diaper rash is still horrible, he's having so much tummy trouble, it's hard for his bottom to heal.

Jake had to have a blood transfusion this morning. This is quite normal, it's either a blood transfusion one day or platelets the other. His fevers are not as high today, so far it's been up to 102.2 Yesterday's high was 104.1. He was so miserable yesterday. I think the new antibiotic is helping.

He let me do mouth care this morning, and didn't scream or fight me, so I think the inside of his mouth is healing. I hope that his throat and stomach heal up fast, but we were told this could last a week or more...

That's all for now...
Thank you for ALL the encouraging words and prayers. We love reading them.

Always in our thoughts and prayers are:
JOSH, ROBERT, HILARY, EMILY & MAT
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
*****NEW PHOTOS*****CHECK THEM OUT******

Saturday, May 19, 2001 at 08:24 AM (CDT)
<><><> DAY 5 <><><>
Good Morning Friends & Family-
Jacob was in alot of pain from the mucocitis yesterday. The doctors hooked him up to his own pain medicine whenever he needs it. After a while, they decided to make it continuos, because he was in so much pain so now the morphine is automatically given to Jake evey hour. There is a big difference. He acts alot more comfortable and even plays a little with us when he's got that medication.

I thought I would be able to leave Jake and get some sleep at the motel last night. Brian was all ready to stay, and I couldn't leave. I can't leave him when he's not feeling good. All he wanted me and Brian to do yesterday was hold him. So we piled into that hospital bed and snuggled Jake.

It's 9:00AM and Jake is still sleeping, he did rest better last night, but was running really high fevers all night long. His temp was 103 at 5AM this morning. They are giving him some powerful antibiotics and tylenol to help with the fevers. He has been running a fever back and forth for two days now, the nurses say this is expected and not to worry. But it's hard not to....

Thank you all for the wonderful words of encouragement and prayers. We really appreciate them!

That's all for now...XOXOX

Always in our thoughts and prayers are:
JOSH,HILARY,EMILY,ROBERT & MAT

Friday, May 18, 2001 at 10:47 AM (CDT)
New photos, check them out!

DAY <><><> 4 <><><>
Good Morning All-

Jake didn't sleep all day yesterday. He was in a little pain from the mucocitis (mouth sores) yesterday morning, so the nurse gave him a little morphine, that seemed to make him feel better. I thought it would make him sleepy, but it didn't. His Best Buddy Amy came to play with him last night and they read some books and played. Thanks AMY!

Jake refused to eat yesterday, he did drink a few sips of sunny delight. Daddy came in last night and Jake and I were really happy to see him. Jake fell asleep around 8:30PM. We thought he was out for the night, but he was having alot of stomach pain, so the nurse game him a little more morphine. This seemed to help, because he slept until about 4AM before waking in pain again.

This morning I tried to do mouth care, and he screamed in pain. I still cannot see any sores, but his gums are a purplish in color and he's talking funny this morning. I know he's in alot of pain. We continue to try and keep him as comfy as possible. We are going to try and get him walking in the halls this morning, even though he doesn't want to, because he is very clingy. We have to keep him moving, and exercise is good for him.

I'm so glad to see the sun shining today! It's beautiful outside....We have a pretty good view. I'm glad for that. Jake loves to stand on our chest and look outside. Right now he's listening to his music cd's really LOUD on my radio. I think the morphine is helping him. I believe they are going to hook him up to a PCA, this will allow pain medicine to be given with a push of a button.

Thank you all for the wonderful thoughts and prayers. We appreciate them very much!
XOXOXOXOXOOXOXOXOXOOXXOOXO

Always thinking about & praying for:
Robert,Mat,Josh,Emily & Hilary.....

Thursday, May 17, 2001 at 10:11 AM (CDT)
Good Morning Everyone-
Jacob had another restless night. His tummy trouble kept him awake. He still has a bad diaper rash. I think the ointment is helping.

Jake slept until 10:00AM this morning. His counts are really low, so he's feeling really tired. His platelets are really low, on the verge of another transfusion. It's scary when the platelets get low, because they are what help the blood clot if you get cut or start bleeding.

Daddy is coming back up tonight. He said he made the whole floor a pan of baked ziti, can't wait to have some...

It's been so gloomy here the past couple of days, I miss the sunshine, shining in on us.

Jake walked up and down the halls like a mad man last night, he spotted some balloons behind the nurses station and had to have them. I mean there were about 15 of them. So, picture me, pushing an IV pole loaded down with Jake's machines, and one nurse pushing Jake in his car behind 15 balloons!! It was a trip...litteraly....

Jake isn't eating very much, just nibbling on a nilla wafer. He refused sunny delight this morning. His gums look swollen and he says his mouth hurts. I feel really bad for him. We are trying to keep him as comfy as possible.

That's all for now, Thank you ALL for all the encouraging thoughts and prayers! We miss you...

Always in our thoughts and prayers are:
JOSH,EMILY,HILARY,MAT& ROBERT

Wednesday, May 16, 2001 at 08:51 AM (CDT)
Hello Family & Friends-
Jacob and I rested a little better last night. Jake is still not eating very well, so the doctors are going to put him on TPN this evening. TPN is a supplement for all the nutrients he's missing while not eating. He did manage to eat a nilla wafer this morning and take a couple of sips of sunny delight. I think his mouth hurts him and possibly his throat.

We are continuing mouth care 4 times a day, as directed to help with the mouth sores. We still can't see any sores, but his tounge is white. One of the nurses said it might be burned from the chemo, that's why it's white. He is not complaining yet of pain, so I'm thankful, but I know it's coming..

Jake received platelets this morning. His counts dropped from 35 yesterday to 20 this morning. This is expected, his other counts are dropping as well. We are expecting his counts to bottom out later this week.

Jake learned how to use a pair of scissors yesterday in his CELL MATES play time. Emily the child life worker, taught Jake to cut paper. She said she almost lost a chunk of hair a time or two, but she got him under control. We have his beautiful artwork peices hanging in our room.

That's all for now, thank you all for the love and support you give.

Always praying for:
JOSH, HILARY, EMILY, MAT, & ROBERT
XOXOXOXOXOXOXOXOXOXOXOXXOXOXOXOXOX

Tuesday, May 15, 2001 at 11:43 AM (CDT)
Hello Family & Friends-

Last night we had a rough night, Jake is having alot of tummy trouble. So, he's going potty alot which has caused a horendous diaper rash. Hopefully the ointment they prescribed will help.

Except for a nilla wafer and a 1/2 of a mini muffin Jake hasn't eaten anything. I think his mouth is getting tender. The beginning of mucocitis (mouth sores). We cannot see anything ourselves, but he won't eat or barely picks at food today, so I'm guessing that's the problem. Other than that Jake acts normal. He still gets really MAD at me when he has to put on the MASK, but eventually he will get used to it. The doctors want everyone to exercise at least twice a day, so we walk up and down the hall untill Jake gets tired.

Daddy left this morning, and will be back at the end of the week. Jake broke everyone's heart by saying "Daddy don't leave me" I'm sure it about killed Brian. I know it is hard for him to leave us. Pray for him to be strong while he's away from us.

My very good friend Brenda & her husband Dan are here for the week helping me out. Thank you Brenda for being here.

That's all for now, I will update you all very soon. Thank you all for the encouraging words & prayers. They are very appreciated. XOXOX

Special prayers are ALWAYS for:
JOSH, EMILY, MAT, HILARY & ROBERT
We are constantly praying for their healing & strength.

Monday, May 14, 2001 at 12:09 PM (CDT)

Monday, May 14, 2001 at 07:59 AM (CDT)
Hello Family & Friends-
Brian & I are very excited today, because Jake is getting his own cells back today. He slept pretty good, me and Nurse Andrea had to tickle him awake this morning. What a sleepy HEAD!

Jake is having some tummy trouble from the radiation, but is still eating pretty good.

The time for his transplant has not been determined, but I will update this page and add new photos for you all to see.

Jake's best buddy Amy came to play with him last night so me & daddy could run an errand. We bought him a nerf soccer ball and he loved it! He kicks it really hard down the hall and then goes running after it. He's a doll.
That's all for now....
XO
Special prayers for:
Robert, Mat, Hilary, Emily, & Josh! We love you guys!

Sunday, May 13, 2001 at 11:30 AM (CDT)
Happy Mothers Day !!!!

It's the best Mother's Day yet. I'm so happy that we are here, and Jake is able to have this procedure. Brian and I are very fortunate. Jacob is doing okay this morning, he was complaining of his tummy hurting earlier, and wouldn't eat. I ordered him a "HAM SAMICH" (that's what he calls it) and he started to eat it. He also ate some nilla wafers.

He still will not drink anything, but he is receiving PLENTY of fluids through his IV.

Daddy brought us breakfast this morning from The Cracker Barrell, it was fantastic! THANK YOU DADDY!!!

As always Jake and I are very happy to see him when he is here. Well, I'm going to get Jake up and walking around the hall for a while. I will update you all tomorrow after his transplant. I'm still not sure what time this will take place, but I will get plenty of photos for everyone to enjoy!
Thank you all for the prayers and support!

Special thoughts and prayers are always with our friends from home:
Josh, Emily, Hilary, & Mat..

Also Robert, our next door neighbor here at Duke, our thoughts and prayers are with him and his family too!

Saturday, May 12, 2001 at 09:38 AM (CDT)
Good Morning All-
Jake was HAPPY to see Daddy this morning bright and early. SO WAS I!!! Brian brought us breakfast and Jake ate another sausage pattie this morning. I was suprised because all he would eat yesterday was popcorn. Thank the LORD for popcorn!! Jake is still drinking just a little bit at a time, because he is taking so many fluids through his IV.

Jake started his LAST chemo treatment this morning at 10:00AM. It normally runs for about an hour, and then it it over.

My freind Pat & I decorated Jake's room yesterday while he slept. He has a school of brightly colored fish swimming all around the top of his room. He also has a BUNCH of smiling faces above his bed with the "GROW CELLS GROW!!" saying. That is the term here when you are given your transplant.

Jake's transplant will be on Monday sometime...I'm not sure when yet??? But you can be sure I will take plenty of video, and pictures for EVERYONE TO SEE!!

Jake slept wonderful last night, in fact I had to wake him this morning at 8:00AM, now why can't he do that when we are at home??

As always, he's an angel...I'm glad we are all together again for a couple of days. Brian is in the room right now snuggling with Jake. They are soooo cute together.

Bye for now, Thank you all for ALL the wonderful thoughts and prayers. We really appreciate it very much!
XO
Chanda

Friday, May 11, 2001 at 09:28 AM (CDT)
Good Morning Friends/Family-
Jake slept really good last night, I'm such a light sleeper even the quietest of people will wake me. I'm adjusting as well. Jake ate a sausage pattie this morning, and wouldn't drink anything.

SECOND DAY of chemo, seems to react fine to it so far, but will have reactions next week....

Jake's labs showed he is developing a bacterial infection, so he had to be put on VANCOMYCIN antibiotic. This antibiotic causes what's called "RED MAN'S" which makes Jake look like he's sunburned in the face. His nurse gave him some benadryl and he fell asleep. So, he is comfy cozy and snoozing along right now...

Auntie Pat is here today for a visit. We walked around the halls this morning, the gown and glove rules have been lifted, so only masks have to be worn. YEAH!!!!
THANK YOU AUNTIE PAT FOR COMING TO VISIT!

Thank you all for all of the wonderful support and prayers.
XOXO

Thursday, May 10, 2001 at 12:42 PM (CDT)
Hello Friends/Family-
Today Jake received his FIRST chemotherapy treatment "MELPHALAN". The Chemo started at about 11:00AM and finished at 12:00PM. Jake hasn't seemed to mind it very much. Next week he will feel the effects from it, the doctors tell us.

Jake is his usual cute self today. He GOT REALLY MAD because he has to wear a protective gown, mask, and gloves when he leaves his room. He DID NOT LIKE THAT AT ALL! He cried and cried. I kept telling him how proud I was of him, and how brave I thought he was. He still wasn't happy But...these are the rules, and he will adjust to them just fine. After about 15 minutes he forgot about all that and played with the plastic bowling ball set they have here. He's a BRAVE little man, and we love him sooo much.

Thank you all for the encouraging thoughts and prayers.

XOXOX
Chanda
Special thoughts and prayers are also with Mathew, Hilary, Emily & Robert next door to us in #5216. Robert played peek a boo with Jake this morning.

Tuesday, May 08, 2001 at 02:26 PM (CDT)
Well we are HERE! Jake was admitted this afternoon around 5:00PM. I'm very glad to be here and to be getting Jake started on the LONG road to recovery!!!

We are getting settled in for the night. Thank you Jessica for helping us get settled.

Jake starts chemo tomorrow sometime?

Tonight he will be started on fluids.

Thank you for all for the wonderful thoughts and prayers.

Tuesday, May 08, 2001 at 10:03 AM (CDT)
Good Morning All-
Jake did GREAT this morning!! We are sooo relieved, he ate breakfast and has held it down. His counts are staying pretty good too! We are very proud of him. He didn't cry at all this morning when we went into the treatment room. We all sang Twinkle Twinkle little star again, and he went right to sleep. He's an angel...We are getting ready to be admitted tomorrow afternoon, I'll post another update soon. Thank you all for the wonderful support & prayers! XO

Monday, May 07, 2001 at 03:55 PM (CDT)
Monday morning's Total Body Irradiation treatment made Jake pretty sick. He couldn't hold anything down at all. We took him to the clinic for labs and Dr.Driscoll gave some fluids and ZOFRAN (zofran is an anti-nausea medication that works wonders).

After about an hour Jake seemed better. This afternoon we are holding our breath after his treatment, hoping he's able to keep some crackers and juice down. So far, so good.....Maybe with Zofran given a little bit earlier in the AM, tomorrow's AM treatment won't be as bad on him.

Right now Jake is resting comfortably watching his favorite videos. Thank you all for all the wonderful thoughts and prayers...

P.S. Jake wanted to know where MICKEY was this morning!!

Saturday, May 05, 2001 at 10:20 AM (CDT)
I wanted you all to know Jake's radiation treatment on friday afternoon went good. We got there a little early and we were very happy because when we entered the building and came around the corner MICKEY MOUSE was there!! Jacob gasped for air and said "Mommy look!, it's MICKEY MOUSE! (he whispered this to me) We laughed and I asked him if he would like to go say hello to Mickey. I set him down and he went running toward Mickey hollering MICKEY MICKEY!! Well then you know everyone started dragging their cameras out becuase Jake was just hamming it up with Mickey. It was the cutest thing I've ever seen. Jake wouldn't let Mickey go very far....When it was time for Jake's treatment we undressed him and he kissed Mickey on the nose first of course, then he kissed Daddy. I went in with him again and sang him to sleep. In 5 minutes it was over and Jake woke up about 10 minutes later. Mickey was great for Jake, now I have to figure out how to tell him Mickey won't be there next week..... All the folks in radiology are the sweetest people, very compassionate....

Friday, May 04, 2001 at 10:12 AM (CDT)
Hello All-
This morning's radiation treatmet went well. Jake starts covering his nose and mouth as soon as we start walking toward the radiation room. This morning he said "COME ON MOMMA" so, I held him tight today and sang to him until he fell asleep. The nurses and doctors offered me a job to sing to all the little children. I told them I'd do it for free...

Jake went to sleep faster this morning than yesterday afternoon. I think he's doing wonderful! The radiation treatments this week are very short, and he's receiving a very low "RAD" because he is so little. After the treatment is over we waited about 5 minutes and he woke up ready to GO! But first he wanted his yogurts. He drank two and we were out of there. Jake was able to FINALLY eat dinner last night, We both were relieved.

As always we continue to PRAY PRAY PRAY! After this afternoon's treatment we will head home for our last weekend of normal life for a while....Please keep Jake in your thoughts and prayers on monday morning as he starts his Total Body Radiation.
Thank you all for the wonderful thoughts and prayers.

Thursday, May 03, 2001 at 02:08 PM (CDT)
Jacob has finished his third radiation treatment today. This morning and this afternoon went smooth.

I watch outside on the monitor, As Jake and Daddy go into the radiation room. Jake puts on the mask, Daddy has to coax him into this because he usually has his hands over his mouth and nose already...he knows what's about to happen. Then Daddy starts singing a song and in a few seconds Jake is asleep. The treatments are so fast, they have us in and out, in less than 15 minutes. After Jake woke up today he drank three "drinkable yogurts". He wanted more, but I was nervous considering he hasn't eaten hardly since Tuesday evening. He had a some goldfish crackers last night, but nothing but liquids so far today.

We will continue to pray for God to give him strength through these treatments and hopefully somewhat of an appetite. Three down and two to go tomorrow...

THANK YOU ALL FOR THE WONDERFUL THOUGHTS AND PRAYERS!XO

Wednesday, May 02, 2001 at 03:12 PM (CDT)
Jacob had his FIRST radiation treatment this afternoon. He did wonderful! The sedation jake underwent is by gas, so he and Daddy sang twinkle twinkle little star and Jake fell a sleep in Daddy's arms. I sat outside the radiation room and cried my eyes out. I remember having an overwhelming sense of panic when Jake first received chemotherapy. I had the same sense of panic today. The whole treatment lasted 15 minutes. Everyone is truly caring and very gentle with Jacob. I am thankful for their compassion. We needed that today. Brian was strong and wonderful as always. Jake woke up from sedation after about 5 minutes and CLUNG to me like CRAZY GLUE. I feel better now... knowing what to be prepared for, I just pray GOD continues to take care of Jacob as he has so far. Thank you all for all of the wonderful thoughts and prayers...they mean the world to Brian and I....until the next update XO

Monday, April 30, 2001 at 12:45 PM (CDT)
Hello All-
We are headed back up to DUKE tonight. Jake's transplant evaluation is tomorrow. We have alot of paper work to sign and we have a consultation with Jakes doctor. Wednesday radiation begins. Jake will only be having radiation once. Thurs & Fri he will have it twice a day. We are praying that he endures radiaiton well, and won't get sick. I will update the page and advise you all as the week goes on. Thank you for all the wonderful thoughts and prayers.....

Friday, April 20, 2001 at 05:18 PM (CDT)
Friday morning's MIBG test went well. The test is very long and Jake has to be very still, so the doctors had to sedate him. It took him a while to wake up but when he did wake up he was ready to GO HOME!
We don't have to be back until May 2nd for radiation. We are really glad to be home to get rested up for the next trip.
Until next update......

Thursday, April 19, 2001 at 12:08 PM (CDT)
Hello Everyone!
Today Jake had the 3D Simulation Mapping, in preparation for radiation May 2nd, 3rd, & 4th. He will also have another MIBG injection (nuclear medicine injection) in preperation for that scan tomorrow.

We have been postponed a week, due to bed availability on the unit. Waiting is the hardest part sometimes..We are all very anxious for Jake to get started and get better. Please keep him in your thoughts and prayers. XOXOXOXOXOXOXOXOXOXOXOXOXOX

Monday, April 16, 2001 at 07:38 PM (CDT)
Jake's xrays at CMC went well, this child is such a FLIRT with all the nurses (he reminds me of another Courtney I know) HAHA.

We're off to CMC again in the morning for the Eccocardiogram. After that we will be packing up to stay a few days in Durham for more pre-ops and tests at Duke.

I found out today that Jake could be scheduled for TBI the week after the "tumor bed" radiation, this means that he might not be admitted until May 7th...???? I promise I will update this page as we go along.
That's all for now. XOXOXOXOXXOX

Thursday, April 12, 2001 at 02:35 PM (CDT)
Hello again-
The Radiologist called and stated that he wanted to start radiation on April the 23rd. I will have a series of tests run at CMC prior to radiation, and will be at Duke next week to meet with the radiation team. I will have to be put to sleep twice a day for radiation 4/23 - 4/27. We are still waiting to hear when I'll be admitted to the unit. Please pray for me during this time! Thank You! XOXOX

Wednesday, April 11, 2001 at 09:03 PM (CDT)
Pheresis was slow to go this morning, but we got started around 10:00AM. I keep busy watching my Blue's Clues and Thomas the tank engine videos and playing the nintendo games Child Life provides. I'm getting good at the "Duck Hunt" video. I might have to be pheresed on Friday. We all met with the Radiologist today. Radiation will be scheduled right before admission to the Bone Marrow Unit. They seem to think that should be around the 1st week of May. We will know more after the radiologist consults my oncologist. That's all for now.. Keep me in your prayers....XOOXXOO

Tuesday, April 10, 2001 at 09:02 AM (CDT)
Hello Everyone!
Pheresis went GREAT on Monday. I will have to be Pheresed again on Wednesday 4/11/01. Apparently pheresis is going much better than in February. They collected more cells on Friday than all the times I was pheresed in February. THIS IS AWESOME! We want as many stem cells as we can get! I am still full of energy, though Mommy & Daddy are trying hard to keep up..... Wednesday I also have my radiation CONSULTATION. Mommy & Daddy are anxious to find out when radtiation is scheduled. That's all for now. XOXOXOXOOXOXOXOX

Friday, April 06, 2001 at 05:15 PM (CDT)
Hello-
Jake was able to start Pheresis today THANK GOD! We were very pleased. As always he's an angel, and we are very blessed. He has to have Pheresis on Monday & Wednesday. We are also meeting with the radiologist on Wednesday for his radiation consultation. We hope and pray all continues to go well for Jacob.

Wednesday, April 04, 2001 at 08:55 AM (CDT)
Jake had to be at Duke Clinic for CD34 test to see if pheresis was possible. The test results showed Jake's counts were not high enough to start on Wednesday 4/4. Jake has to be back at Duke Clinic Thursday morning for another CD34 test. Hopefully he will be able to start pheresis on Friday! If not Dr.Driscoll will schedule a bone marrow harvest next week.

Friday, March 30, 2001 at 03:16 PM (CST)
Last chemo was 3/9, 10 & 11 at CMC. Headed for Duke next. Will have Pheresis and or marrow harvest possible next week. We are looking forward to treatments getting started at Duke. The waiting is the hardest part.

Saturday, February 24, 2001 at 09:57 AM (CST)
Jacob has just started his Pheresis procedure at Duke. After Pheresis, he will have one more chemo treatment at CMC. Once recovering from that treatment he will have Pheresis again. After this some "outpatient" radiation will be needed before he will have his Bone Marrow Transplant.

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