Mommy, Daddy & Alexa

Sunday, November 6, 2005 10:39 PM CST

Thursday, November 3, 2005 4:48 AM CST

I am once again going to give all of you a very sad news. My little friend Carlos passed away at 1:30 this morning. He left this world peacefully in the arms of his Mommy and Daddy and was surrounded by his family. If you can please visit his website and write on his guestbook. www.caringbridge.org/visit/carlos or click on his name below.

Sunday, October 30, 2005 0:24 AM CDT

Well, sorry about not updating for a week. Nothing much happening here with us. Jerry has just been working a lot. Alexa of course, is just as busy as can be.

Today(Saturday) was a busy day for the little princess. She had her Saturday morning skating lessons then, a picnic in the park with her friends from Awana, she had a great time and I just love the people there from Crossway they are all so sweet! Eventhough I didn't know everyone, I didn't feel uncomfortable not even a bit. Then, we went to a costume party at our friends Michelle and John's. It was great! Alexa dressed up as Tinkerbelle, Jerry was a Nerd and I was a fairy. I will post pictures soon.

Well, I guess that's about it! Thank you all for checking up on us once again. There really isn't that much excitement going on around here but I will try to update as often as I can.

Please pray for our friends especially our friend Carlos, I don't really know what is going on with him lately, but he still needs lots of prayers.

Our friend Christian is about to go back to New York to start a trial vaccine for Neuroblastoma and that is coming
up soon.

Our friend Jeremy just lost his dad and he is very sad and heartbroken. He was very close with his dad and I don't really know how he feels but all I know is that he needs to find the same peace that I have found eventhough I lost the love of my life------David. This is going to be very sad time for me when I go to his viewing and service especially because it is in the same place that we held David's. Please think about Jeremy as he goes through the hardest time of his life.

I can't really think what to write, my heart is just to sad. I feel like my life is surrounded with so much sadness right now and I do feel bad for my friends who are around me, I hope that they never feel like I am dragging them down with me.

I would like to thank all of you for supporting me and loving me. You all knows exactly when I really need it! I can't even ask for better friends! I especially loved the surprise visit from my friend Shelly on Tuesday. We haven't seen each other in almost a year, but she knew about David, so when she came, all we did was hug each other and it was just such a happy moment to see her again.

And we would like to wish our friend Alex a HAPPY BIRTHDAY! We will see you at your party!!!!

***************
Dear David,
I miss you soooooooooo much! I wished that you were with me tonight at the costume party. You would've been Darth Vader. I was imagining you running around with Alexa and all the other kids there. I am pretty sure though that you were watching.

Don't ever forget how much I love you and that I love you more and more everyday!

The last few nights, I have been going outside just to watch the stars. They are so beautiful! They seem to be twinkling at me, and they make me smile, coz I think about you everytime I see them in the sky.

Guess what I saw last night? I saw a meteor! I wished that you were there with me watching how beautiful the night sky was. Eventhough I always said that you are my sunshine, my only sunshine, you are also my star and my moon. Just like Daddy said to you, you are everything to us.

love,
Mommy
XOXOXOXOXOXXO

Saturday, October 22, 2005 10:56 PM CDT

The days are getting harder for me. Everyday hurts even more, I am trying to accept that David is forever gone, but it just doesn't seem real. How could he be gone? He was such a good boy!

Today, I took Alexa to her regular Saturday morning routine, which is go to the skating rink. Then Jerry came to join us later on and we skated---just the three of us, it didn't seem right. There were times that all I wanted to do was sit, hoping I can find David somewhere in the crowd, maybe in the video game section. But he wasn't there. I had to try and hold back tears so many times today. It was not easy.

Then, Alexa went with my sister Ivy to spend the night and normally, I would say no. But I felt so bad. She loves her Auntie Ivy so much, she wishes that she lived with us. When she left with her, Jerry and I watched a movie and cuddled on the couch together. He really wanted to go to a movie theater but I didn't feel like going anywhere. After the movie was done, I glanced at the mirror and remembered how David would normally be standing at the top of the stairs asking Jerry and I if he could cuddle with us. And we would say ok, then he would come down while holding puppy and he would jump on the couch with us very excited. I spent the rest of the night crying in Jerry's arms. I miss David so much, and nothing can ever take away this emptiness that I feel inside.


December is almost here and that is normally the time for Jerry's company party. My mom would come with us so she can watch the kids in our hotel room while Jerry and I partied with his friends and then we would wake up the next day and take them to the beach to collect seashells. My most favorite part is when we arrive at the hotel, Alexa, David and I would sit at the balcony and just watch the ocean as the waves come crushing down. David would always say "Whoooooa!!! You saw that Mommy?!"


Most couples would be so happy to have "time alone together" but not Jerry and I. All we ever wanted was to be with our children as much as we can. We figured, when the kids are 7 & 9 years old, they are going to be old enough to where we can leave them with our family and they will be just fine. They probably wouldn't want us around as much anyways because they will think that they are too cool to hang out with us old folks. When David turned 2 years old, we even started taking both of them with us to wherever we were going to spend our anniversary---mostly at a very nice hotel or at the beach for a three day weekend. Our kids love staying at hotels, I remember Alexa saying a comment one time "Mommy, wouldn't it be cool if we lived in a hotel? Then we can just step outside and the beach will be there and you wouldn't have to clean up!" We know that it is good for couples to spend time with each other alone, but we also know, that our kids are only little for a short period of time, then they grow up. That's when we will have all the time in the world to spend with each other probably going on vacations somewhere relaxing, sipping smoothies since we don't drink :)

I hope that you guys enjoy reading my entries, although I don't really know what to write most of the time, I love writing my memories. Especially memories of David. I am so afraid that I am going to forget sometimes so I write what I remember. Alexa have been keeping me busy and I started doing murals again this week. I am going to be busy working on my friend Melissa's house for the next month. It really helps me to stay focused and relax. Painting is very therapeutic but sometimes it makes me sad because I have to concentrate so much that I can't think about David. I am also going to be starting photography soon, so I don't really need to get a job because I am going to be busy enough while Alexa is in school but I will be here for her to pick her up at the end of the day and whenever she needs me to take her to her classes, and just to spend Mommy and Alexa time together. I hope, that I don't become too busy to not have time to stop and remember how wonderful David was and how much love and joy he brought me. How could any mother forget about her child? I know that even if I lived up to 100 years old, I will still remember what a wonderful son David was and how lucky I am to be the one he calls "Mommy". I want to keep David's memories forever so I am asking all of you who knows David and have memories of him to share it in his guestbook so others can read them. You all can write about David as much as you want coz I know in my heart, that that's what he would want. Thank you all for checking in on our family and please know that your messages mean so much to us.

Monday, October 17, 2005 10:23 PM CDT

Goodmorning everyone and I mean that from the very bottom of my heart. Eventhough David isn't here, I know in my heart that he is just fine. I just know.....

This one is going to be short.

Alexa and I are better now. Her wheezing is gone and my flu-like symptoms are also gone.

and of course I want to wish our friend Cesar "HAPPY 20-11th BIRTHDAY!!!"

I hope that everyone had a great weekend coz we did! And I know that David is right along with us!

Thank you all for the messages that you have left us. And thank you for continuing to check on our family. Please don't forget to visit David's little friends as they continue to fight their battles and keep them in you prayers. Thank you all once again. I will write more later.........

I missed David even more yesterday because we went to the lake and I had no one to take care of. It was really weird. Alexa went off with her other little friends and rode the jetski with Jerry. One of her little friends had to go to the bathroom, so I took her and on the way there, we passed the playground. It just seems like yesterday, David and I are playing in that very same playground. We have been to this same lake many times and I always took David to that playground, that was his favorite part. I loved hearing him say "Weeeee!!!" as he was coming down the slide.

He thought that he was so strong because he can climb up the rock wall all by himself. And the green pretend motorcycle was there. David loved that! He always made me laugh everytime he got on it coz he would say "Yeeehaw!!!"

I saw people eating Star Crunch-----and thought instantly of David. David could eat 5 star crunch in a row if I let him. He was such a junk food eater!

Thursday, October 13, 2005 11:00 PM CDT

Today, Alexa and I went to Walmart to get some plastic bins to store David's stuff in. Alexa bought a shopping cart, the perfect size for her so she can play pretend shopping at home. She was so excited to go home and I was taking a little long to pull out the bins from the shelf. She asked me, "Mommy, do you really need those? What are those for anyways?" I told her that I had to pack up David's stuff and she almost started crying. "But you can't do that! I don't want you to do that!" I told her that I am just going to clean up his room a little bit. She said "But please don't throw anything away..." with a sad face.

Which ever aisle we went to, she would say how David would ask me to buy him this or that. We got to the halloween section and she said, "Ooooh, if David is here you know, he would want you to buy him this Star Wars costume. Coz he wanted to be Darth Vader for halloween. I miss him so much!" I said, "Me too baby, me too....."

I am so thankful for Alexa. She has helped me so much with David's death. I truly don't know what I would do if I didn't have her. And to all my friends and family, I wouldn't know what I would do if I didn't have you guys. Thank you all so much for loving me and caring about me. Everyday I get up knowing that David isn't going to be here to greet me with a great big smile while saying "Good morning sunshine.....I am awake in the morning!" But I get up anyways because Alexa is here to greet me with a great big smile saying "Good morning Mommy, are you awake this morning?

Wednesday, October 12, 2005 10:35 AM CDT

Hello everyone.
Nothing much happening here. First I would like to thank you all for signing Alexa's website, whe loves reading all your messages. She gets so excited everytime there's a new one. I will be adding new pages soon with pictures, just haven't had time.

Alexa is still home with me, she is still sick. Her wheezing is a little bit better but she is coughing alot! I took her to the hospital yesterday to get her x-ray done and she cried because she was so scared. She was with David and I alot when he had his testings done and she remembers the CT scans and how they would have to inject David with contrast before they do that scan and she thought that they were gonna have to give her the same "shot". Poor thing is as paranoid as I am. I had to do a little bit of talking to her before I could convince her that having an x-ray is the same thing as taking a picture, you just have to sit still for a few seconds and then you're done. She said "Mommy, the catscan is so much more scarier, coz you have to go through that tube. David was so brave.....he didn't even care when he would get a catscan." I will get the results today to see what is going on with her lungs.

Thank you all for visiting and thinking about our family. Halloween is almost here along with Thanksgiving and Christma and I am so sad. Alexa and I went yesterday to pick up some pumpkins to carve yesterday and I know I'll be really sad but at the same time, these holidays coming up will be a great time to talk even more about David and the happy memories we made with him during those times.

I will write more later......

Monday, October 10, 2005 7:41 PM CDT

Hello everyone,
I don't even know how to start this entry, my brain is on paranoid mode and all I could think about is that something really bad could happen to Alexa. I took her to the doctor's office today. We were there for more than 2 hours (including waiting time) She has been so sick, yesterday, I almost took her to the hospital. Dr. Silva listened to her lungs today and said that she is very, very tight so he added another medication in her nebulizer on top of the albuterol and she is also taking prednisolone, a steroid to open up her lungs and an antibiotic, just in case she has a respiratory infection. When David got diagnosed with cancer in January, Alexa did not have an ashtma attack at all until we came back from New York after David has passed away. It was like as if her little body knew that I can only take care one sick kid at a time in the hospital, so she put it on hold until I can take care of her 100 percent.

Today, she seems better. I didn't send her to school though so I can keep an eye on her. She felt good enough to go to piano lesson but she skipped gymnastics because she is still wheezing pretty bad. I was supposed to take her to the hospital to get a chest x-ray today, but she was hysterical so I told her we'll do it tomorrow. I spent time with her on the couch, watching tv and playing operation. She talked about David all day. She is not normally a talker, but when it comes to David she is non-stop. She said the sweetest thing to me, "Mommy I don't ever want to stop talking about David. I always want to remember all the things that we used to do together so I don't ever forget about him." She is only 6 years old but she seems so much older when she says things like that. She has so many memories of David, I hope that she doesn't forget any of them either.

I used to have one of those tiny little voice recorders and I used to carry it around with me along with my camera because her and David loved it when I would record their voices, singing or just being silly, especially when I would play it back to them. This thing came in really handy when there's a long wait, like standing in the line waiting to pay at the store or waiting in the waiting room anywhere. The little tapes that contains Alexa and David's voice a few years ago along with their pictures are my priceless treasures.


When I was at the playroom putting some of Alexa's toys away the other day, I found one of David's toys that his grandma got him on the floor under one of their dress up clothes and it was one of those voice recorders, I was so excited to push the play button hoping that I would hear David's voice, but it didn't and I was so sad, I started crying. I remember the first time he played with that toy, he said "Hi Mommy!!!" over and over again and he thought that it was so cool because his voice sounded like an alien.

Thank you God for giving us memories to stay with us and remind us of David and all the great times that we had with him.

I have to look up one of Alexa's meds in the computer and she had asked me why do I have to do that and I said I just want to know the side effects are and she said "Why you don't want it to kill me?" I am speechless right now.......

But I want to thank you all for visiting and checking up on us again, from the bottom of my heart.
I will update again when I can......

Alexa would like to wish her friends PAIGE AND KRISTINA a very HAPPY BIRTHDAY yesterday, sorry she couldn't come to your parties. And she hopes that you guys had a fun time!

Saturday, October 9, 2005 2:32 AM

It's 2 am and I don't think I'll be sleeping tonight. Alexa has been sick all day. She woke up this morning with a fever, then she started wheezing and we just pretty much stayed on the couch all day.

I have given her 3 treatments of albuterol. And I am a nervous wreck!!!

I am trying to fight sleepiness, so I drew a sketch of her sleeping, I put it in the fridge so when she wakes up, she can see it, I know she will love it!

I will update more tomorrow....

Thursday, October 6, 2005 7:52 AM CDT

Yesterday was almost as hard as the day that David died. I cried almost all day, though I had to smile for others, I couldn't hold my tears back. I was pretending that life is normal, but it's not! I thought it was gonna get better when I took Alexa to Awana but I saw two brothers the same age as Alexa and David and they were just hugging each other and of course there was no way I could hold the tears back.

Then, there are all these little girls laughing and I was thinking they must be so excited for Halloween to come, I'm pretty sure most of them are going to be princesses. Madison was going to be an angel for Halloween, her costume wasn't just going to be one of those cheap costumes you buy at the party store, it was homemade. Tanya just received it a few days before she passed away and now, instead of trick or treating and getting all excited about how much candy she gets, she will be wearing her angel costume for her funeral.

Alexa saw how heart broken I was and she kept giving me hugs and kisses and telling me that she knows that I miss David so much and she misses David too. When we got home, she took her dry erase markers and drew a heart broken in half and it said, Mommy, I know that this is how your heart is right now, because David is not here anymore. And she left her message on the table for me to see. Then she went to the bathroom and got me a handful of tissue. I told myself I shouldn't show Alexa how sad I am but I think that I should, because I don't want her to think that David's death didn't affect us in any way.

I was throwing something away yesterday and I can't remember what it was but Alexa came up to me and said, "Mommy why are you throwing that away, are you trying to erase David out of this world?" She must have been listening to me when Jerry was cleaning out the garage and was going to donate some of David's stuff and I was screaming at him and asked him how could he just get rid of his stuff? This is all that we have left of David and if he gets rid of them, he will just be erasing David out of our house.

If it weren't for Alexa I would just be a basket case. She was soooooo excited to go to Awana and show all her teachers how hard she worked on her verses so she can receive her crown pin and a red jewel. She was so funny, she was literally giggling and screaming in excitement when she finished memorizing, she was screaming while jogging in place right before we were walking out the door and when we got to the school, she was screaming again with her arms in the air saying "WHOOOOO! We are here!!!! I am going to get my crown and jewel today.!!!!!! Go Alexa! Go Me!!!!!" I have never seen a six year old girl so excited about receiving an award in my life! She definately deserved that crown pin!!! You go baby!!! Mommy is sooooooo proud of you!

I want to thank you all for visiting again and checking up on our family. I also would like to thank you all for the messages you left, I love reading all your messages, even just letting us know that you stopped by means so much.

I would also like to thank Jerry for being the best husband in the world. He has been so supportive of me, the poor guy barely sleeps because he tries to comfort me at night while I am hysterically crying. People told me that this is the hardest times in someones marriage when they loose a child but I think loosing David just brought Jerry and I even closer together.

I am lucky and so proud to have him in my life. I know that there is no one in the world that would make a better husband than him. He shows me that he loves me more everyday, my favorite time of the day is when he wakes up in the morning he gives me a kiss on my shoulder and he holds my hands, and he tells me that he wishes he could just stay home and be with me all day. I feel so safe and secure when he is near me. For our anniversary, the card that he gave me said:

For my Wife,
Real Love is,
the look in someone's eyes
that is meant for you alone,
a gentle kiss that says everything will be okay,
a hand held in just the right way
at just the right time.

Real Love is,
a secret told by one heart
and guarded by another,
a belief that someone knows you
as no one else can,
the little day-to-day acts of thoughtfullness
that go unmentioned but not unnoticed.

Real Love is,
a feeling that no matter where you are,
the deepest part of you
remains with the one you love,
a dream that comes true
with time and trust and a little luck.

Real Love is A Promise Forever.

The best thing that can happen to a person is to find real love. And that's why the best thing that ever happened to me was finding you. Happy 7th Anniversary. Can you believe that it's been 7 years? One day we will look back and say, "Can you believe it's been 20?" You might as well, face it, you're stuck with me!
love,
Jerry

I wanted to share this with all of you who reads David's website and show everyone how much love Jerry and I have for each other. We were meant to be together since the first day we met which was 10 1/2 years ago. I think that our love between each other shows Alexa a very good example that eventhough something really bad happened to our family, she will always have us and know that her and David were the fruit of our Love.

Tuesday, October 4, 2005 5:18 PM CDT

Today, I have double heartache.  
I keep thinking about David's little friend
 Madison  , she
has gained her angel wings today at 10:30 am, at the same hospital, the same
room and the same bed where David gained his angel wings.  She fought for
two years, had 2 succesful surgeries but in the end she contracted pneumonia and
a very bad fungus infection that spread everywhere.  Please, please visit
her website if you can, the words that our family received from every single one
of you who wrote in David's guestbook gave us so much comfort knowing that we
weren't alone when David passed away and her family can really use that kind of
comfort right now.

Sunday, October 2, 2005 10:03 AM CDT

Hello everyone.......

Friday, September 30, 2005

I just want everyone to know that

CARLOS

Sunday, September 25, 2005 8:36 PM CDT

Before I begin this entry, I want to wish Cyrus a big happy 5th Birthday and sweet baby Aubrey is ONE!!!!

Ok here I go.....
Another sleepless night last night. My brain is still thinking that David will be coming down in our bed anytime between the hours of 2 AM and 4:44 AM, I have already accepted the fact that he isn't going to come down at all ever again, but my brain is arguing with me, coz obviously, my internal alarm clock is still programmed to go off with the time that David set it to.

The other thing that is so weird to me is that everytime I have a dream about David it is always around those times. Last night I woke up after a dream about David. In my dream, mine and Jerry's wish got granted, to go back in time before David's surgery. Eventhough a long life isn't guaranteed with Neuroblastoma because of high relapse, we would still take a chance just so we can have David here with us for a little bit longer, to hear him laugh and experience once again those wonderful hugs and kisses he shared with us and see his great big beautiful smile. To watch him grow up and be the man we hoped for him to be. Anyways, all of a sudden, our whole family was back in the airplane to New York and it was again July 18th. David was sitting next to me and Jerry and Alexa is on the next row of seats to the right. Jerry and I looked at each other because we knew exactly what happened to David but it was so weird that he was once again alive. He was sitting on my lap just smiling at me. It was as if we just woke up and the last 68 days from the day of his surgery was just a really horrible nightmare. Jerry and I both broke down into tears while looking at each other's eyes. I told David to go to his Daddy and he did. Jerry sat David on his lap and held him so tightly and told him that he loved him so, so much while tears of joy flooded down his cheeks.

All of a sudden, we were at Memorial Sloan-Kettering and our wonderful social worker Diane greeted us warmly with a great big hug and told us how glad she was to see us again and she told us that she thinks we should cancel the surgery. She knew also what happened to David.....
Jerry and I were suddenly sitting in Dr. LaQuaglia's office and he was telling us that he knew also what happened to David and it is not a good idea to go through the surgery. He showed us the scans and he was so puzzled because the scans showed that David's tumor has disappeared and his blood work showed that his blood counts were of a normal, healthy 4 year old boy. The rest of his test showed nothing abnormal. It was as if David never got cancer, we all looked at each other and shrugged our shoulders. Dr. LaQuaglia asked us if we wanted to have David's broviac taken out, and I said only if he doesn't go under. And that was the end of my dream. I opened my eyes and knew that was just a dream, I cried hysterically for a few minutes and I started screaming, "what time is it?" The alarm clock has fallen off the night stand and it was under our bed I got up and picked it up off the floor, the time was 4:47.

SATURDAY

I went to luch with Stephanie at a mexican restaurant. Little cutie-patootie Ciera sat next to me and Cyrus sat next to his Mommy right across from me. Stephanie and I both ordered chimichangas and it came with a little bowl of rice. Cyrus thought that my rice was his because it was next to his plate, so he started eating it. Stephanie told him "No Cyrus! That's Sarah's rice." and of course with a great big smile on Cyrus' face he gave me my rice back and said "Oh well, I don't like that kind of rice anyway." I said it was ok and we all went back to eating. Next thing you know, Stephanie was giggling and I looked at her, thinking "What is so funny?" She said with a giggle, "My rice is moving"
I didn't say anything, I just looked over at her rice and it really was moving! It moved twice! It was as if someone had a great powerful magnet underneath the table and was moving the bowl of rice a little at a time! Stephanie and I laughed so hard! I looked at Cyrus and I said to him, "Cyrus, David is here! He is saying that since you took my rice, he is going to take your Mommy's rice!" Cyrus just laughed along with us and said, "For real?"

Stephanie said "You know I am not crazy! You saw that too, right?" I said "Yes...." while laughing.
She picked up the bowl of rice while feeling the table. "The table is rough and the bottom of the bowl is also rough. There is no way this thing just slid on its own. The table is also dry.....I know I am not crazy!" We were both still laughing. I started pounding on the table with my elbow to see if the the bowl will move again, but nothing happened, Ciera thought I was playing a game so she joined in.

Stephanie and I were both so puzzled and tried everything we can, to see if we can make some kind of logical answer why the bowl of rice moved. I even picked up her drink and put the bowl on it where it had lots of condensation from the ice, but the bowl just slipped all the way to the end of the table and she said that both the table and the bowl were both dry when it happened. Where is the myth busters when you need them?! What about you guys reading, what do you all think of this?

Thursday, September 22, 2005 8:30 AM CDT

It's been 28 days since David went to heaven. I dropped Alexa off school this morning and driving home, I can almost hear David behind me screaming, "that way Mommy!!!Gym is that way!!!Oh men!" I went home crying my eyes out.

Today is going to be a very hard day for me. It feels like everyday is getting harder and harder. I can't even explain how much I miss David. There's a song that Sinead O'connor sang and one of the verses said "I can put my arms around every boy I see, but they'd only remind of you." Each time I held David he knew how much I loved him, coz he would always look into my eyes and with a great big smile on his face he would tell me, "I wove you, Mommy".

Today is picture day for Alexa in school. She was so cute this morning. She has been preparing for this day since yesterday, she even wrote in her agenda...."Picture day tomorrow--thursday!"

Alexa misses David like crazy. The other day she came home from school and told me that one of her friends from school brought cupcakes for snack time because it was his birthday the day before. She said that the cupcakes had Bratz rings or Hulk rings in them. She told me that she picked the Hulk ring because it reminded her of David. Then that night when I took her to gymnastics, I told her she can pick out a new leotard in the rack. She looked for a long time. And said "Well, I like this flowery one, but I think David will be happy if I picked out this green one." Alexa was born with such a caring and thoughtful heart. She has always helped me take care of David. Sea World was one of the kids favorite places to go to. Our family used to go there at least twice a year, sometimes more. They have this huge play area for kids and one of them have a bunch of tubes that sprays water everywhere. David loved it! He would run around it like a maniac while Alexa followed him around. She would never let him out of her sight. I am so thankful what a great sister she was to David, but now, she feels empty and she feels incomplete just like me, without David. She never did anything without David being there. I have been trying to keep her busy but it seems as if David is constantly on her mind. A couple of days ago, I asked her if we were to have more babies, what would she like, a boy or a girl. She answered me "Well, I think, I would like to have a girl, because I am always the only girl in the picture when all the cousins take pictures and plus there can only be one David." I hope she doesn't think that I am saying if we were to have more babies, that we are trying to replace David. We can never replace David!

I want to say thank you all once again for visiting and checking up on our family. I can't believe that you guys are still here checking David's website constantly. This means so much to me! I am sure that David is looking down on all of us with a great big smile because everytime that each one of you opens up this page, he is probably saying...."Yep! that's me! David!"

I have been told by some of you that the paypal button is not working, if anyone is interested in making a donation for the t-shirts, please email me and I will work something out. My email is thenards2@bellsouth.net
I will figure the button thing later.

Also if you all have a chance today, please take the time and remember David and all of the other kids who lost their lives because of Neuroblastoma.

Please include some of David's friends in your prayers---Hannah-fight infection, Madison-fight infection, Nate and his mother Ashlie-courage and strength and overall healing, Aaron-clean scans, Baby Trenton-BMT #2 is coming up, and most importantly, Carlos-fight infection and a little girl named Emily-her parents are being faced with making some tough decisions for her.
I believe in prayers and I know that God answers them, we just have to trust Him. I have proven it lots of times....

Monday, September 19, 2005 11:50 AM CDT

I received a card today from Dr. Hajjar's office and brought me to tears. Everyone signed it. While reading each one of their messages, I pictured David and his days when he used go for his weekly checkups (sometimes 2-3 times a week) This is what the card said and it was so true:
"We are given many precious gifts
as we go through life.
Some we are allowed to enjoy
fo a long time....
others only briefly.
But each gift has the power to change
and enrich us, to make us
better human beings."

Thank you all for caring...it means more than I can say.

Sunday, September 18, 2005 9:07 AM CDT

Hi everyone!
Most of you are probably wondering what is going on with us. We have been keeping ourselves busy. Busy out of the house but lazy at home. I still haven't cleaned my house!

Yesterday, Jerry's mom came over to pick up Alexa so they can go to breakfast with her friend Donna who is visiting from out of town. She came back later with presents that Donna gave her and it's a bunch of toys! She just loved her especially her belt buckle because it had "diamonds" on it! I am so thankful for everyone who makes Alexa feel so loved! This is exactly what she needs. Lots of love and attention. She misses David a lot and everynight she asks which star shines the brightest because she thinks that is David looking down on us. Remember that David has a star named after him, thanks to Discount Tire Co.!
That star makes Alexa feel better. I told her the other night, "I bet David is singing to you that song that we used to sing together from Rapunzel....Constant as the stars above, always know that you are loved. And my love, shining on you, will help you make your dreams come true. Will help you make your dreams come true......and she said while looking at the star, "I love you David!"

Last night while driving home from our friends Stephanie and Cesar's house, Alexa asked what happened to the stars because there was none and she wanted to see David star. Without thinking I replied to her that they went to sleep. I used to say this to David when I couldn't get him to go to sleep. I used to tell him that everything goes to sleep except for him!. But he was so smart and said to me, "well, the stars are awake!" and I told him, "sometimes they also go to sleep..." So one night when it was cloudy, I was so excited to show him that the stars are sleeping coz there was none in the sky, he said "look! there's one!" and I said to him, "that's Grampa looking down on you, saying...David, go to sleep!!!!" and he said "Oh, Hi Grampa!"

Children are so innocent and they believe whatever you tell them. Jerry got mad at me for telling Alexa a "stupid answer". It is so much more fun for me to tell them silly little stories than the real thing. Yeah, it doesn't help her be smarter but it sure is fun for me! You guys should hear their Gramma's stories that she tells the children, I am a grown up and I love them! My favorite is when she brought Alexa this little treasure chest full of all kinds of different jewels. Alexa showed me her treasure and said "This is a real treasure box that granma found. And these are real diamonds!!! Aren't they cool?"

Our children grow up so fast nowadays and they are so smart, sooner or later she is going to learn about the outer space in school. And she's eventually going to stop believing that the brightest star up in the sky is David, but for now, this gives her comfort and hopefully, she'll go to bed without any more fussing because "everything goes to sleep, even the stars."

Thank you all for checking up on us. I am actually going to get up and clean up now. Next week I start to find a job. There is no reason for me to stay at home, especially now that Alexa is in school. I would also like to ask for you all to include my friend Holly in your prayers, she just had surgery. She seems to be recovering from the surgery well, but her 4 girls are so worried about her because of what happened to David. Thank you all once again, and I promise, I am going to get off my lazy butt and clean up, without anyone telling me!

Thursday, September 15, 2005 5:31 PM CDT

Acts of kindness really makes a big difference in the lives of others. Today, I received a few of them--- Phone calls from my friends who said they were just thinking about me and flowers from Pediatric care group (Dr. Silva's office).

I have been trying to update David's website since yesterday and I just can't concentrate. I had a mental breakdown yesterday, the realization that David is really gone hit me hard yesterday while I was in the line paying for Alexa's shoes. I went in by myself while Jerry parked the car. While standing in the line waiting to pay, I felt my heart heavy all of a sudden. Tears started forming in my eyes, I was getting ready to just run out of there coz I felt that this wasn't just going to be a few sad tears, this one was going to be a hysterical, sobbing moment. Thank God as I was about to burst, Jerry walked in, he rubbed my back and comforted me. I took in a deep breath and I felt better. We are so thankful for Discount Tire Co. for being so understanding and giving Jerry sometime to take off and take care of his family. I haven't been a very well functioning mother lately to Alexa. It's like as if when I left New York, I forgot to bring my spirit with me. I am like a walking zombie. Jerry and Stephanie have to think for me and tell me what to do, otherwise, I am completely lost and would probably spend all day infront of the computer watching David's videos.

As I sit here, typing, all I could think about is how grateful I am for Jerry, Alexa, my family and friends and all the strangers who are thinking and praying to God to please give us the comfort that we need. God is saying "Yes" to those prayers because I am right now so comforted knowing that I am not alone. I have so many people who love me , who care for me and will be there for me no matter what.

The other day, I thought to myself that maybe one of David's purposes in life is to show me that there is a God. Doesn't it seem so cruel of Him though to do this to us and to make David suffer? I kept thinking and trying to find an answer, and I think the answer to my question is that maybe since God is the God who knows everything, past, present, and future, He knew that the world we live in is a very sinful world, full of sickness and diseases. God knew what David was about to endure, so He decided to use David instead as his instrument and one of His messengers to let us know that there is a God and He will take care of us and love us no matter what. How awesome is it that David was chosen to be given a very special purpose and a guaranteed life of happiness and love for eternity in heaven. Most of us could only wish to have that priviledge.

When God planned out David's purpose in life, He knew that Jerry, Alexa and I will be left with broken hearts and He made sure that we are taken cared of by giving us friends and family who will be supportive and loving, to reassure us that He loves us and will never leave us. I don't believe that God gave David cancer, I don't believe that God would ever give any of us any of these horrible diseases. He is the God of comfort and healing and I have to believe that He may not have given us the "Miracle that we are expecting" here on Earth but David is now completely healed and pain free forever in Heaven among God and His Angels.

Tuesday, September 13, 2005 7:09 AM CDT

Dear David,
I woke up at 4:11 am, just like everyday waiting for you to come downstairs to my room and ask if you could cuddle with me. But you didn't, and I am so tired today, not physically but mentally. Daddy and I were talking all night last night and we were saying that you and Alexa gave our lives a meaning. You were the one that completed our family and without you, there is a hole on each of our hearts and it hurts so badly that we have to take deep breaths every few seconds when we are thinking about you, which is pretty much all day and all night.
I miss everything about you....you gave the best hugs and kisses ever. But I know that eventhough you can't give me hugs or kisses anymore, someday, when I see you in heaven, you will shower me with all the kisses and hugs that I missed in this lifetime.
I love you forever and forever.....

XOXOXOXO-Mommy-XOXOXOXO

Sunday, September 11, 2005 7:50 AM CDT

In my dream, I was in the hospital and there was someone chasing me. I think it was a guy. I don't know why he was chasing me but all I kept thinking in my head is that I had to hide from him. And in this same hospital, is where David's body is, laying in that cold stainless steel table. But he looked so comfortable, the white blanket over his little body is neatly folded on the top just like how you're supposed to when you put the sheet over your bed. He had on his yellow plaid shirt, the same shirt he was wearing when he took his two year old picture. I could see him from a distance. He's got a head full of hair, combed back and stiff with gel, just like how I used to style it when he was two.

All of a sudden, I was in the Philippines. I just came back from shopping and went home to the same house that I grew up in. I walked in a room (I remember this room, this is where our room was. The very same room that Ivy was born in before my aunt turned it into the video room)My grandma who passed away not too long ago from a stroke, was there. She was ironing, just like how I always remembered her. Ironing was something she always did when she had nothing else to do. David was in his jeep stroller next to my grandma. He looked like he was just asleep but I knew he was dead. I put my purse on the handle of the stroller. Then I kneeled on the floor and stroked David's hair. With tears forming in my eyes, I looked behind me and asked my Aunt Virgie, who was standing in the doorway if David was going to come back. Then she started crying and said to me "It's too late Sarah, his eyes are already fully dilated." I turned my head back to David and touched his cheek, all of a sudden, he started opening his eyes. I picked him up. He was so heavy and long. Just like when I held him in the hospital when I was saying goodbye to him. He started crying hysterically, I tried to comfort him, but that's when I woke up and my dream ended.

I jumped out of bed so I could tell Jerry about this dream before the details start to fade, but I couldn't find him. I kept saying "Ok....no one's home right now, everyone I know just probably left to go to church or still asleep. Ooh! Stephanie! Please be awake! Please be awake!" And she was! Yeeeeyyyy!!! I told her about my dream and I said I am kinda sad because I know that I will forget all these details and she told me to get on his journal and start writing, and so I am. Thanks Stephanie!
I know I can always count on you when my brain is not functioning very well.

As of right now, I have pretty much forgotten most of these details but I can still hear David's crying. Why was he crying? And why was my Grandma there? The exact same words that my Aunt Virgie said to me were the exact same words that Dr. Jenni Snow told Jerry and I about David's odds of being resuscitated and having a good quality of life. I have tons of questions in my head, but I can't answer any of them.

Last night, Ivy and Jarrett took us out to dinner and I felt myself getting ready to break down on the way to the restaurant. This is not fair! We shouldn't be going anywhere without David! I know, these are all normal feelings I am feeling. I am out of words for now, and I have to really get up and start the day. I am about to take Alexa to a birthday party (HAPPY BIRTHDAY ASHLEY!) but I am just soooooooo sad. I guess, one gift that God gave me is the ability to be able to hold back my tears and I am really using that gift. Thank you God! And thank you for giving me Alexa. And thank you all for checking back on us. I will be adding a new section at the end of David's journal, and it will be called
~DAVID'S CORNER~ I will write some memories about David and you guys are more than welcome to email me about some of your memories and fun time about David.

~DAVID'S CORNER~

Saturday, September 10, 2005 0:36 AM CDT

People kept telling me that time will heal our pain. Even if a hundred years go by and I am still alive (hopefully I don't grow that old)this pain that I have in my heart will always be the same. NOTHING can ever take this pain away!

However, the love that we have been showered by our friends and family and even strangers is just so incredibly amazing, I don't even have words to describe how I feel. And knowing how much support I have gives me the comfort I need, eventhough no one in this world will ever understand how I feel inside.

Friends are constantly calling me(I am not avoiding you guys, I promise you that I will return your calls, as soon as I can) to make sure I am ok, we have enough dinner invitations to last us for a month---tonight we had dinner with the Lehman's and it was the best REAL dinner we've had for over a month now. It hurts so bad to go over a friend's house---David's job was to knock or ring the doorbell. He thought he was such a big boy to do that! We have also been receiving plants and flowers from everyone---I love the plants especially because they remind me of David, I can take care of them and nurture them, hoping they won't die on me(I don't have a green thumb)and these plants make me smile---it's also good therapy for Alexa, she helps me water them and she thinks they are pretty. Today, we received a plant from Steve Fournier, thank you so much! You don't even know how much this brightened Alexa's day---another plant for her to water.

Today, Alexa didn't cry not even once. She was so busy, she forgot to be sad, even when we talked about David. Diane, our social worker from Sloan Kettering sent her a book called "Goodbye forever" and she told me how good the book was because there is a place for her to write "In Memory of David Journey Norris". I don't know how Alexa is feeling right now, especially when we pick her up and David is not there, screaming at her "Alexa!!! I love you, Alexa!" She was so proud of David before and she is still so proud of him now, especially now that he has gained his wings. She actually thinks that the pictures of David as an angel is real....she told me yesterday, "Mommy, look at David, he just looks so happy." then smiled and said "I love you, David!".....Deep breaths for me.

THANK YOU ALL ALSO FOR THINKING ABOUT OUR FAMILY. Jerry and I have definately been blessed with the most awesome friends in the world and I will keep saying it over and over and over again. I just hope that I can do the same thing to others, give back to those who are in need what my friends have given me, hopefully more.

David's memories are everywhere and there are still so much for Jerry and I to do, so we are keeping busy and most of these things are running around and doing errands. Today, we had to go to the bank to close out David's savings account and I just couldn't hold back the tears anymore. I kept saying that we are erasing David slowly in this world and it's just not fair! I wouldn't know what to do if Jerry wasn't here with me right now. Wherever we go, I end up going back in the car and crying my eyes out while Jerry stayed inside the store or the bank to get whatever we needed.

Our wedding anniversary is coming up, and I was just thinking how much our love song applies to us right now. "you say it best, when you say nothing at all", Jerry gives me comfort just by him being by my side. He makes me feel stronger knowing that he is there, just holding my hands and looking into my eyes and holding me when I burst into tears.

We visited Doug and his family today (they live right by where Alexa takes her piano lessons) and I am so happy to see him. He looks sooooo good! Gaining more weight and growing more hair! Dustin was there and Robby and Debbie and Nick, I think Richie was asleep. This family is another gift that David has given us, they are just wonderful, loving, and sweet family---Thank you David!

Tomorrow is another day---I hope that it will go as smooth as today. Please remember to take time to help others even in just little ways, everytime that any of you open a door for anyone, think of David, he opened the door for me wherever we went and he was only 4 years old....he would be so proud of you.

Tuesday, September 6, 2005 7:30 PM CDT

Monday, September 5, 2005 8:09 PM CDT

Well, I am here updating still. I promised David that I will keep his website going so the whole world can know about him and what a brave hero he was.

I miss him terribly. Today, I told myself that I will get up and clean but I just can't find the energy to do it. Jerry promised Alexa that he would take her to ride the jetski. Not having David here is sooooo hard for Alexa. She has cried so much and keeps writing David notes, and telling me that she misses him so much. This is the first time that she was actually home with us and didn't want to leave only because her Daddy promised her that she will get to ride the jetski today.

The house is so full of memories of David. Everywhere I look, his memory is there. I don't think this heartache is ever going to go away. I told Jerry that I didn't want to go anywhere today. He didn't want to leave me alone but he had no choice, he had to keep his promise to Alexa. I was fine being at home, but it was a very sad and lonely day. I laid down on the couch and watched David's videos over and over again until I fell asleep.
My Mom came over and took me to a framing store to get a frame for a picture that my friends Melissa and Stephanie gave of David---it was an awesome picture of him on the beach covered in sand and it says "our #1 Hero". The beach was one of David's favorite place in the world, next to Dr. Hajjar's office.

Tomorrow is another brand new day. It is a very busy day, I will finally get to meet Alexa's 1st grade teacher and will actually get to be a mother to her again for the first time since I went to New York with David.

Thank you all again to everyone whose been checking up on us. Like I said before David's Journey did not end when he went to become an angel. I will try and update as much as I can, so please come back again......

and don't forget to BELIEVE IN MIRACLES......

Sunday, September 4, 2005 8:52 PM CDT

David's Memorial service was soooooooo beautiful! I know that David was looking down on all of us saying....."wow! all these for me?".

I want to thank all of you who came to say your final goodbyes and to give Jerry and I and Alexa your love and support. And to those who couldn't make it I know that you were thinking about us and David....THANK YOU! I don't have enough words to say how thankful I am for all the help....for Parkway Baptist Church, my best friends Stephanie and Cesar, for Nick and Debbie for the beautiful service, the wonderful people from Crossway Community Church for helping with the party for the celebration of David's life, our friends Steve and Doris and their company for putting the perfect slide show together, to BaseCamp---Ms. Terri and Paula for providing the T-shirts, my friend Cindy for making the cards for David and for helping out and of course my friends Melissa and Pete for helping us for EVERYTHING especially helping me put together the special music video, it will be cherished forever!

The best part of the night was remembering David.....it was very sad for me because I know that after tonight, everyone will be making new memories and David will not be included. It was especially sad for me hearing my voice sing David's songs and knowing that I will never be able to hold him and cuddle with him and sing him his lullabyes.

I am so not ready to start the day tomorrow.....I feel like a part of me died with David and I don't feel like doing anything but I have to remind myself to get on with my life because I still have Alexa and as much as it hurts to get on with our lives, I have to do my best to give her the life that I promised her when she was born. I prayed to God to please continue guiding me because I am right now so lost. And to please make sure to remind David about us and to let him know that we love him more and more everyday eventhough he isn't with us anymore.

Here is something someone sent me and I would like to share....

The Chosen Mothers

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mothers of children with life-threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, he instructs his angels to make notes in a giant ledger....

"Armstrong, Beth, son, Patron St. Matthew"
"Forrest, Marjorie, daughter, Patron St. Cecilia".
"Rutlege, Carrie, twins, Patron St. Greard"

Finally, He passes a name to an angel...."Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy?"

"Exactly!" Smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" Asks the angel,

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off she will handle it."

"I watched her today," Said God

"She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in You." said the Angel.

"No matter what, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods "if she can't separate herself from the child occassionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted, she will never consider a single step ordinary. I will permit her to see clearly the things I see... Ignorance, cruelty, prejudice and allow her to rise above them.

"And what about her patron saint?" asks the angel, his poised in mid-air.

God smiled and says...."A mirror will suffice...."

Friday, September 2, 2005 8:15 AM CDT

"Good Morning Sunshine!" This is what I am supposed to be saying to David instead of whispering "I miss you....David". My heartaches so much, I feel like it there's a ball stuck in my throat. I didn't sleep very well last night. All I did was wake up every two hours waiting for David to whisper to me "Cuddle with me, Mommy...." But he didn't and I know that he never will.

The viewing was just so beautiful. Almost everyone wore green. I pictured David smiling and saying "WOW! I love it!". Everyone kept saying how strong I was, but the truth is that I am not. When David saw me crying when he was first diagnosed, he told me no crying is allowed for me, because it's going to be ok. He was so brave....for everything that his little body went through, the vomiting, the fevers, the sores in his mouth, esophagus and intestines, headaches, tummy aches, tiredness, dizziness, the list of yuckiness that he experienced for the last seven months is just so long, but no matter what, he never lost that big, beautiful smile. So, eventhough my heartaches so badly that I feel like it is going to just stop beating, I have to just smile and think of how brave my little hero was.

The hardest part of losing David is watching Alexa hurt inside. David is such a big part of her life. He was her best friend. They did everything together....from splitting a twin pop to playing tea parties and David was always there for her....her school functions, dance recitals, whenever she would get out of gymnastics, David was always there, waiting for her to finish her class so he can give her a great big hug and get a slurpie.

I just don't know where to start my life from here. I know that taking care of Alexa is our priority, it's always been. I just don't know how to do it without David, he was my partner....my shadow.....my bestfriend. Almost every decision I have made in the last 4 years, I always asked David what he thought. And he would always say "Yep! I like it!", then he would continue playing his game.

Thank you all once again for checking in. The flowers were all so beautiful I can almost hear David scream..."What is that smell?", while covering his nose. Then I'd say "it's flowers," and he'd reply, "aaahhhh, flowers.....smells good!", with that big 'ol smile on his face.

Thank you to those who drove so far, eventhough there is gas shortage, just to say your last goodbyes to David. I will be sending out thank you's later, I PROMISE!

SUNDAY, SEPT. 4, 2005 IS DAVID'S MEMORIAL SERVICE.

Where: Parkway Baptist Church
9000 Lake Underhill Rd.
Orlando, FL 32825

Time: 4pm-6pm
Date: Sunday, September 4, 2005

Website www.parkwaybaptist.org

A gathering upstairs will follow the service. On the church's website you can get Mapquest directions from your home. Sarah and Jerry would also like everyone to know that you do not need a formal invitation. They would like everyone who can make it to come. They will have access to the nursery for those of you who would not be able to find babysitters.

IF YOU CAN PLEASE WEAR GREEN. IT IS DAVID'S FAVORITE COLOR AND AT THE SAME TIME, IT IS THE COLOR THAT SYMBOLIZES LIFE. SUNDAY WILL BE A CELEBRATION OF DAVID'S LIFE. THANK YOU ALL.......

TUESDAY (another day without David)

UPDATE:

VIEWING

Where: New Comer Family Funeral Home
895 S. Goldenrod Rd.
Orlando, Fl 32822
(407) 277-4227

Time: 5-9 PM
Date: Thursday, September 1st, 2005

MEMORIAL SERVICE


Where: Parkway Baptist Church
9000 Lake Underhill Rd.
Orlando, FL 32825

Time: 4pm-6pm
Date: Sunday, September 4, 2005

Website www.parkwaybaptist.org

A gathering upstairs will follow the service. On the church's website you can get Mapquest directions from your home. Sarah and Jerry would also like everyone to know that you do not need a formal invitation. They would like everyone who can make it to come. They will have access to the nursery for those of you who would not be able to find babysitters. Please see Sarah's attire notes below.






DAVID'S FAVORITE COLOR IS GREEN. SO IF YOU WOULD LIKE, YOU CAN WEAR GREEN INSTEAD OF BLACK. I KNOW DAVID WILL BE SO HAPPY TO SEE EVERYONE WEAR GREEN...I REMEMBER ONCE WHEN HE TOLD ME THAT HE WISHES THAT EVERYTHING WAS GREEN. EVERYTIME I WOULD WEAR GREEN, HE USED TO TELL ME "I LOVE IT!"

If anyone would like to send flowers, please just make a donation to Basecamp in the name of David instead...their website is wwww.basecamp.org. 100 PERCENT OF THE PROCEEDS WILL GO TOWARDS THE FAMILY. Thank you all....

David's obituary will be posted in the Orlando Sentinel tomorrow.
(August 30, 2005)

Thank you all once again for all the prayers and concerns and all the supporting messages you have left us. It means so much to us both Jerry and I.

How am I Doing?
(c) 2003 Terry Burnett

I guess it all a matter of perspective, or the person you might ask.
What time I choose to wake up today, and would I complete today's task.
Will I choose to start the day off right, by offering my devotions to God above?
Or will I choose to start the day off wrong, by hurting someone I love?

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

The words are going through my head, In my ears the melodies are ringing,
In my heart I can feel a joyous song, I just can't make my voice start singing.
At times I feel like a tin man in the rain, That can't move and is covered in rust.
I know with time I'll be myself again, because it is God in whom I place my trust.

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

I know the difference between right and wrong, I have learned it from my youth.
But some days emotion takes over, and all that is wrong becomes the terrible truth.
I want to be strong and free again, to make a difference and to others be light.
To leave behind this terrible darkness, and regain once again my sight.

So please continue to pray for me,
As we continue to pray for those that we love.
Because you never know the difference it makes,
Or the Blessings that might come from above.
And if you ask me how I am doing,
And I respond that I'm doing well.
I might be living in heaven today,
Or I could be going through hell.

Friday, August 26, 2005 3:02 AM CDT

Thursday, August 25, 2005 4:39 PM CDT

Our friend Tyler's lost his battle today from his brain tumor....His family is right by his side and keeping him comfortable. I cannot even imagine what his mother is feeling right now, please visit his website and leave Tyler and his family a message....this will mean so much.

http://www.caringbridge.org/visit/tylersoohoo

Tuesday, August 23, 2005 0:09 AM CDT

At 11:30 am, David's right lung decided that it's had enough of the Oscillator so it collapsed. His blood pressure(60's/40's) and Oxygen(46) level dipped so low. Since the right lung was collapsed all the pressure pushed to the left side and his heart worked so hard it was beating 202 beats/minute. The doctors had to flip him on his back so they can work on him. Dr. Coffey pushed a needle on his chest to let some of the air out, it sounded like as if he was deflating a tire. And they had to put an emergency chest tube on him, just in case there's a hole on his lung or something. (I asked to please make sure that he is asleep so he doesn't feel any pain).
The doctor told us that it would be best to leave this chest tube for a little while just in case this happens again, because without it, he may not survive. He also warned us that "if" this happens again, they may need to insert another chest tube, this one on the top of his chest. As if he already doesn't have enough tubes coming out of his body.

My Mom and sister came in the middle of all this. I had to kick my sister out of the room coz she was crying, seriously, I can't have that near me. My mom called Jerry right away and he said he was so scared out of his mind, he ran to the hospital as fast as he could(he had just walked back to the house to take a shower right before this incident happened). He found me frozen in the corner of the room watching every move that these medical personnel were doing. All I know is that it was such a relief seeing him. When he held me, I just wanted to break down and cry but I didn't find the energy to.

I saw pain in his eyes when he asked me if I was ok, I saw the same pain when I had to give him the news about his dad 2 years ago. It's just so unfair! I hope to God I never see it again. I prefer to look in his eyes and only see the "I'm so happy-life-is-great" look, I'm sure his mother would want that too. I remember her telling me once that she thought losing a child is the worst thing in the world, but watching your child suffer and not be able to do anything about it is worst......


It took an hour and a half to get David stable. The doctors connected him to the conventional ventilator for a few hours and then they flipped him back on his stomach, turned his head to the left and reconnected him back on the Oscillator. Since he has been laying on his right ear for four days, he had blisters on it and it looked like the whole ear is bruised. The side of his face that he was laying on was squished flat. The other scary part for me was when I checked his pupils to see if he was awake, they weren't the same size. One wasn't responding to the light as fast as it should have been, while the other was just normal. I was thinking if this means he had some kind of brain damage since he was low on oxygen for a little while. My sister Gail reassured me that he will be just fine.

Tomorrow all the doctors are going to have Jerry and I on a conference and I already know what they are going to say..."David is getting worst and we cannot assure you if he is going to make it." There is a part of me that wants to give in, it is true that David's lungs are severely damaged and scared pretty badly and very stiff that's why he isn't getting the right amount of oxygen he needs. But part of me is saying he is going to be just fine. There are signs everywhere. Just like in my dreams, when he would just sit up and say he is fine now....

Let's hope for a better night, I don't think I can handle another surprise.

My Mom is going home tomorrow, I loved having her here coz she did everything for us. I didn't have to worry about our laundry and I was able to just walk to the house, take a shower and go right back to the hospital. When I had to do laundry, I had to be gone for 3 hours or more(because sometimes, I have to wait for other people's laundry to finish) and that seemed like forever.

Thank you all once more for checking in, Jerry read your messages and he said to tell you all thank you. He said to me that we are the luckiest people on earth to have the greatest friends that care so much about us. The support he has received from his co-workers and friends at Discount Tire Co. is so amazing!

That's all for now....

Thank you to to Darlene and Todd Moore for their love gift.

And thank you also Genie for the wonderful surprise care package, it was awesome! Jerry said you are going to make him fat!

And my friend Natalie for always calling me and making me feel that everything is going to be alright.

Thank you to all of you prayer warriors and angels and friends.

And most of all, thank you to Dr. Coffey and Dr. Jenny Snow, our nurse Julie and Abby and the whole respiratory crew, x-ray people and all the medical personnel that helped David today.

Monday, August 22, 2005 9:47 AM CDT

The doctors just came in and they said the same thing again, "Not much difference".
Part of the results that we have been waiting for came in. The initial test results came back that David had 18,000 copies of the CMV virus, the worst case they've seen. They retested him a couple of days ago and it came back that he had 8,500 copies still in his system, a significant drop but they are waiting to see what Memorial Sloan Kettering's test showed, so they can compare (They think that this is an error). Just to remind you all, these doctors are not very optimistic. That's fine, tomorrow we should have the results for the other test.

Today, they are going to turn David's head to the other side. He has been laying on his right ear for 4 days now, and the doctor is worried about sores on his ear. Moving his head to the other side is so scary. That means that they have to move the Oscillator to the other side of the bed and that also means he is going to have to be disconnected from it for a few minutes which means he may loose some of the pressure in his lungs which means it will be a few hours for his body to recover and they will have to give him 100 percent oxygen because it is already a fact that he will desat(Did you all know that too much concentrated oxygen in your blood is toxic?). Let's hope that this transition goes smoothly. I know it will be like watching a very suspenseful movie and I will be holding my breath while sitting on the edge of the seat not knowing what will be the outcome.

There is a little bit of protein in his urine but they said that is nothing to worry about right now.

He is still holding in a lot of fluid so he is very puffy looking. The nurse that we have today will be taking his peripheral IV off on his right hand because of the swelling. He is so swollen that he looks like he is about to explode, especially his feet and hands and his right eye. I hope that's not hurting him.

I guess that is all for now. I am very excited about the first news that I shared with you all. It definately made me smile. I am just so anxious when is the Miracle going to happen? Wouldn't it be great if David just sat up on the bed one day and says hi to me just like in my dreams?

Thank you all for checking in on David and Tyler. His mother loved all the messages that you wrote and it meant so much to her just like the messages you write to us.

I will be going to take a break later(Jerry will be here by himself!) to look for a CD player for David. Melissa sent him lots of CD's to listen to. Music always soothes him. And I figured it will be good stimulation for his brain. As long as he knows that I am holding his hand and that I am going to be always by his side because I love him much more than much too much!

Please can you add little Trenton in your prayers? and when you get a chance visit his site....he is another little boy (much younger than David)suffering from this horrible monster and is also having a tough time right now from his bone marrow transplant. www.caringbridge.org/ga/trentonsjourney

Sunday, August 21, 2005 2:11 PM CDT

The results that we are waiting for are not in yet. The doctors from Memorial Sloan Kettering took a sample of David's blood to check how many copies of CMV virus is present. As soon as they come in to tell me, I will update.

Today, there isn't much happening here. David is still fighting his sedation. He is now on Fentanyl drip 22 mcg/kilo/hour, Ativan 3.5 mg/ every two hours, Methadone 5 mg/ 6 hours, and he is still waking up every 30 minutes! It's like as if he is laughing at these medications.

A few minutes ago, he tried to open his eyes and he moved his fingers eventhough he is on a paralytic medication that is constantly running. I really don't know how he breaks through! He is such a fighter as you all can see, that's how I know he is going to be well soon.

If you all are wondering who is here to relieve me when I have to take a shower or run errands or something, Jerry is here and my Mom. My sister Gail got here last night, and uncle Dave just came to visit today.

Today seems to be a quiet day, maybe I can take a nap later.
David has a great nurse today, Courtney...she is so awesome!
And the night nurse is Vicky, she's awesome too!

I would like to thank you all again for checking up on David although not much to report. To me, he seems a little more stable today, except for his heart rate is very high---164. That's all for now, and I'm sure if David was awake, he would want me to tell you all that he has eyelashes and eyebrows and his hair is growing back in---this time, it's black!

And I'm sure that if he was awake, he would want me to tell those who helped with the carwash "Thank you"....

Saturday, August 20, 2005 9:22 AM CDT

The doctors hasn't come in yet......hopefully they have some kind of good news, I can feel it!

Yesterday, David had 2 attempts to receive blood transfusions and both failed....he had a reaction on both. The first one, his blood pressure dropped dramatically as soon as the it started, so they had to stop the transfusion immediately and started him again on Dopamine(blood pressure medication). The next attempt, a few hours later the opposite reaction happened, his blood pressure went soaring and his Oxygen level went down to the 70's, his face was flushed and he was sweating so bad. So they had to lower the dose of Dopamine(you can't just stop it, the dose must be gradually reduced)and they had to give him 100 percent concentrated oxygen for a little while....

Right now, the third attempt to give him blood transfusion is looking like it is going to be succesful.

If you all are wondering what David looks like right now, he looks worst than I have ever seen, I don't even want to go into details. The doctors said that it's the Oscillator that making him retain more water than usual. Maybe if I am up to it, I will take his picture and share it with you all.

For the last couple of days, David's sheets had been soaked in urine but the nurses can't change his sheets because of the high pressure setting on the Oscillator(it would be way to dangerous to move him). I have just been putting some pads under him (very, very carefully) that looks like puppy training pads, at least he is dry.

Well, that's all the news for now....I will update later after the doctors come in. I would like for you all if you have some time to visit a website about a little boy named Tyler, who is suffering from brain tumor and had complications a few weeks ago with pneumonia-like symptoms. He shares this room with David and they are practically in the same situation as us. Very bad lung disease...the only difference is that they have no options at all....at least we have Cedofovir to turn to if worst comes to worst and the CMV isn't responding. His website is
www.caringbridge.org/visit/tylersoohoo
His parents are so wonderful and they are constantly by his side.

Also, my sister Ivy said that there is a carwash going on to benefit David today at a Discount Tire Store on Sandlake and John Young (walmart plaza) the address is
8107 S. John Young Parkway
Orlando, Fl 32809

Thank you all once again for visiting and checking up on David's "progress". I will update later......

Thursday, August 18, 2005 9:08 PM CDT

Dr. Greenwald along with the other doctors had me in the conference room to discuss David's condition. He is on the maximum setting of the Oscillator and they said that if he was to start going down, that would be pretty much it.
I said OK, and asked a little bit of questions. They also mentioned that David is a very rare case of CMV positive patient with Neuroblastoma, they said that they see a lot of CMV positive patients here in the ICU but they are bone marrow patients with really suppressed immune system. Eventhough the doctors are pounding my head with the words....David is deteriorating and is not improving, I still have this feeling that he is going to be alright. It was like as if these doctors are talking to me but I wasn't hearing what they were saying. Maybe I should've shown to them a little bit of sadness after they said that majority of these patients that come in with the CMV virus don't make it, but I decided to be just calm and not break down.

Dr. Kramer, one of the doctors from the Neuroblastoma team came in today to talk to me a bit. She sent a blood test to check the sensitivity of the CMV virus against the medicine he is on now....Gancyclovir. But results will not be in for a couple of days. They mentioned an experimental drug that could help with the CMV but they will be risking kidney failure. I didn't even let them finish, I just said that we should treat him now with it and deal with the kidney failure later. But they said that if the results came in and the CMV is responding to the Gancyclovir(just very slowly) then there is no reason to risk his kidneys. I just don't get them......they are basically telling me that we could loose David anytime now, but they are scared to damage his kidneys?

The question now is IF David was to start going downhill, what will we do? Should I hold him until the end or do I step to the side and let the medical staff do their best to help him out. I go with the last one. We are not going to give up without a fight, though the doctors have said that even if they were to resuscitate him back, it is not a guarantee that he will ever be the same ever again. I can't even believe that I was discussing this about my baby. But why am I still so calm? I think it's because I know that this situation is not hopeless, there is still a chance that David will get better. The Miracle that I was expecting could just be a little delayed....

With David being unstable, Jerry is coming back tomorrow in a last minute flight. He really wanted to come tonight but it was a little too late. I really miss Alexa, but I am glad that my friend Melissa is taking care of her. I know that she is in good hands....thank you Melissa and Pete.

Thank you also to my support group for calling me and making sure that you all are there if I need you.....

And of course thank you all for checking in on David, I just wish that I can write some happy things instead of sad things....maybe tomorrow will be better.....

Thursday, August 18, 2005 4:00 AM CDT

What am I doing updating David's website at 4 am?
I am a completely freaked out, the doctors, nurses, friends here in the ICU and my mother may think I am so calm....but it is all a mask. I figured, panicking or crying isn't going to do David any good, so it is better to stay calm....

This is how freaked out I am....the laptop is sitting on top of my thighs and I am shivering as if I am cold. I think that my fear is starting to settle in. I am trying to fight it. But it is kinda hard when I am trying to be so strong and tell myself, he is going to be just fine, then the doctors come in everyday just to tell me he isn't getting better....they come in just to crush the hope that I have been trying to hold onto. My David is a fighter. Since he was born, he's had all kinds of problems. He was born with a very bad acid reflux, then he had the worst case of eczema, he even broke his arm when he was just 18 months, but all these things got better and healed then the Neuroblastoma came and I know, as hard as this cancer is hard to beat, along with the complications he's had, David will heal and get better eventually. He will beat this horrible disease, he will go to school, he will get in trouble, he will make mistakes, he will learn his lessons, go to college, move out on his own, find a girlfriend, get married and have children of his own and live happily ever after.....That is very easy for me to say huh? I just wish....

Today, I saw his lung x-ray and compared it from the one he had in the beginning. It looks very bad, worst than the first one. No wonder why these doctors keep telling me he isn't improving. You know when smokers blow their smoke into the air, and it forms a cloud? That's exactly what his lungs look like. It is very hazy. You can't even barely see the outline of his heart.

His CMV virus test came in and it showed a significant amount in his system.....18,000 copies. They sent in for another test today to see if he it multiplied, results should be in by this morning or tomorrow.

He also ran a fever almost all day today, so the doctors took his central line out from his groin and put another one in on the other side. This is the 4th central he's had. His oxygen level has also been going down(ventilator is giving him 101% oxygen and on the monitor it is saying that he is only receiving 85), somehow they can't maintain his blood pressure at a good level also, His ventilator setting is back again at a high level(13) and he is once again put back on the medication Vecuronium(paralytic)so the vent is doing all the breathing for him. The nurse has been suctioning his tube and it is once again bloody. We are back to square one. Dr. Greenwald said that this maybe that the CMV virus is getting worse, unfortunately, there is not much they can to treat it. He is on the three meds Foscarnet, Gancyclovir, and Cydogam to treat it and he isn't showing any improvement. Since he is at a very unstable condition, the lung biopsy is cancelled until he is back to stable condition. Even if they find that he has something else besides the CMV virus...maybe some type of pneumonia, they won't be able to treat him anyways because with pneumonia, the side effect of the treatment would be his immune system going down and if that happens, the CMV virus would take over and that would be it. It seems as if this isn't a win-win situation. Only time will tell what will happen. For now, I will just keep singing him his favorite songs to him and reassure him that I am right here by his side, and to not be scared because I will not let anyone hurt him. And most importantly, I will hope for that Miracle that I have been expecting to come.

Thank you all for checking up on David and for your words of wisdom and encouragement. I would also like to thank my neighbor TJ and Jose for taking care of our lawn while Jerry was gone. And to the nurses that are taking well good care of David....I wish I could send every single one of you to a spa at the end of your shift after taking good care of David. I see how exhausted you all are especially Jacquelyn and Megan.

David keeps these nurses very busy that they don't even sit, sometimes, they skip their lunch break because there is so much to do. And they have been a good friend to me. Jacquelyn especially, she is a very good listener and she gives me very good advice when I need it, she even helps me with my journal entries. I hope that you enjoy your three day break from David, and Thank you so much from the bottom of my heart!

Ok, it is 5:10 am and David is a little settled now, his stats are still not that great. The last blood gas that Megan took showed that he is holding on to 69.6% of carbon dioxide level in his blood. The normal range is below 40%.
The oxygen level on his blood is 63% and normal range is above 80%. Hopefully it will get better in the next hour or so. For now, I don't hear any alarms from his machines so I think I am going back to sleep now. I would like to share with you all a song I sing to Alexa and David before they go to sleep it goes.....

One magic moonlit night,
I met your father
I knew when his eyes met mine
They'd be no other
We share the same sweet dreams
of home and family
And you, made the circle complete.

You came from love,
from two hearts beating as one
From two who wanted you so much
As your life unfolds,
We'll make sure you know
as you grow,
you have the best of us
because you came from love.

Your dad and I both know
as we watch you sleeping
you made the vows we made
always worth keeping
for now I'll hold you tight
tuck you in and say goodnight
and I know that you'll be alright.......


p.s.
It is 5:45 am and Doctor Howell just came in and told me how bad David is doing so she is replacing the ventilator with the Oscillator(this machine is so loud) He was on this machine in the very beginning, this puts him in a bad category. Here is the website to learn more about this oscillator----
http://www.summittechnologies.ca/products/prod_3100a.htm
I'll update later......

Tuesday, August 16, 2005 12:52 AM CDT

It is 4 am and David is asleep like he has been for the last 3 weeks. I somehow felt like he wanted me to be near him, so I got up and pushed the chair next to his bed and as soon as I touched his hand, he grabbed my pointer finger and squeezed it so hard, I thought my circulation was going to get cut off. He held on tight for a few minutes and finally let go after I started singing to his ear Anna's version of You are my Sunshine....it goes....
You are my David,
My only David,
You make me happy,
when skies are gray,
You'll never know dear
How much I love you,
So David please don't take my sunshine away....

I sang that song about 20 times in a row.
I fell asleep next to his bed with his little hand holding on to mine, eventhough it felt like my arm was going to fall off, there are no words to describe how it felt knowing that I comforted him.

The doctors came in today and said that the bottomline is that David is still very, very sick. His lungs hasn't improved after being on the antiviral Gancyclovir for almost 2 weeks now. So, plan B is to do a lung biopsy. The doctors are hoping to find something else besides the CMV virus so they can treat whatever it is that he has appropriately. Dr. LaQuaglia the same surgeon that removed his tumor, will be doing a small incision on the left side of his chest, through his ribcage. Since the ventilator is giving his lungs so much pressure, they expect his lungs to just come out on its own through the rib cage. Then he will cut a little piece of the lung, sew him back up and hope that the pathologist find some answers by next week. David will also have another chest tube inserted to prevent any air or fluid collection in the lungs. The chest tube will only stay on for 2 to three days.

Dr. LaQuaglia also suggested a trachaetomy since they feel that David is going to be needing his ventilator for quiete a long time. And also a feeding tube through his stomach called a g-tube. Since he is not getting enough nutrition right now.

I have talked to Jerry about all these and he is right now thinking about everything. He will be calling the doctor later to discuss everything with him.

The lung biopsy is already scheduled for Thursday and I myself think that we should wait on the trachaetomy and the g-tube. I feel that David is getting better everyday like I said, with the CMV virus, all he needs is time. One of the doctors said to me that if David doesn't improve in two weeks, then the trachaetomy is the best for him....the only thing though is that David's stats are so much better when he is laying on his stomach, if he does get the trachaeotomy done, laying on his stomach is out of the question. I have lots of thinking to do....

Thank you all for checking up on David and for all the prayers and encouraging messages.
I also would like to thank those who donated to Lunch for Life in David's name and to those who donated through PayPal for the family. Thank you all......


Alexa is back to school and she is loving first grade...Melissa, thank you for taking care of her and for everything you have done for our family....you are a great friend!

Congratulations to my friend Cecily and Arnie....they had a baby boy....sorry I haven't called, I can't wait to meet him!

Saturday, August 13, 2005 3:12 PM CDT

If you would like to see David before and after his surgery, click on view photos above.....(lt loads very slowly)


FRIDAY 8-12-2005

Hello........
Last night I freaked out while the nurse was suctioning David's lungs. His heart rate went to 0 for a second, but came back up to 102....His heart rate slows down everytime the nurse suctions the secretions from his lungs. This is called Vasovagal reaction--------> The vagus nerve is the nerve of the muscle in the throat and the larynx, and is the nerve that slows the rate of the heartbeat and supplies the parasympathetic nerves to the lungs, the stomach, the esophagus, and other abdominal organs. arasympathetic means the nerves pertaining to the autonomic nervous system; the system which is concerned with control of involuntary bodily functions. Stimulating the parasympathetic nerves generally produces vasodilation of the part supplied; in general, it slows the heart rate, decreases the blood pressure; contracts the pupils; causes copious secretion of the saliva; and increases gastrointestinal activity. Stimulation of the vagus causes slowing of the heart rate and, if sufficient, can cause fainting or even cardiac arrest. Usually, when this happens, the heart's ventricles start beating on their own despite continued vagal stimulation. Thank you nurse Jacquelyn---you have taught me so much!

Surgery dept. came in at 7 in the morning and is a little concern about him not tolerating his feeds (through his N-D tube), so they will be doing a CT scan later. They will also be flipping David on his back today. Hopefully these activities don't cause any setbacks today.

At 9:45 am, they turned the Vecuronium(paralytic)off to see how long it will take him to start moving and to make sure they are not overdosing him. It is 1:05 pm and he hasn't done any movements yet but he did started breathing a little after an hour which is a pretty good sign, just waiting on him to move a toe or something and then, they will give the medicine again so his lungs can rest.
But only 1/2 the dose since it's taking him so long to recover.

That's all for now....

Thank you all for checking in on David and remember to EXPECT A MIRACLE.....it's on it's way......

Thank you Stephanie for my care package, (Alexa said thank you for her care package too!)

Thank you also to the Peronas for taking care of my babies (Mimi and Jacques) and for the wonderful homemade cards(I can't wait to read them to David)----those are the best kind! (the money was cool too!!!)


SATURDAY 8-13-2005

Hello again....

David had a little bit of a set back again last night. His blood pressures had dropped to the low 80's/40's and was fighting his sedation----A lot! So they had to put him back on a blood pressure medication called Dopemine (a little bit easier than the Epinehprine) and raised his sedation up a little. They also flipped him on his back since he's been laying on his stomach for three days. His stats are better when he is laying on stomach, but he was starting to get a little bit of bed sores here and there, the doctors say that is why it is always a good idea to change his position....to prevent bed sores and it is also good for his lungs, so the fluid doesn't just stay on one side. He was also swollen in some areas like his feet, lips, forehead and half of his neck and his eyes. This is called dependent edema. When they flipped him, it was really hard to look at him because this little boy laying on this bed looks nothing like my son. I thought he was getting better, but he looks worst to me.

Nope! I'm still not giving up on Hope. Whatever is happening with David is no one's fault. I am not mad at anyone, David's situation right now is too much for Jerry and I to handle.....too frustrating! Just writing these updates makes my heartache. I haven't been in a very good mood lately and I am not much into communicating with anyone. All I am concentrating on is to help David get through this. For those who don't know me very well, sometimes I just don't know when not to say things. So if I hurt anyone's feelings....Please I am SORRY.....but I can't deal with anything else right now besides David's situation.

Thank you all again for checking up on David. He is the luckiest kid in the world to have so many friends and family that love him so much they are willing to give up everything for him, just to make him better. I never thanked our family for all the love and support they have given us, especially my sister Gail...thank you for the laptop, without it, the world wouldn't know what is going on with David and I am sure that when he wakes up he will love it so much! And thank you to all her friends who helped her raise over $400! And to my sister Cindy for calling me 100 times a day to make sure I am ok.....and to my sister Ivy's friends from work who sent David the cutest build-a-bear with the spiderman costume, it matches the spiderman pajamas that Mrs. Bess made him.

My friend Stephanie told me she would sell her house and eveything that she has if that's what it would take to find a cure for Neuroblastoma. Right now, there is no known cure and there is not enough funding to find a cure. But if you are willing to give up the cost of a lunch.....just $5.00, the money will go towards The National Children's Neuroblastoma Foundation.....a research funding to help find a cure so no more children like my little David will ever have to suffer from this horrible disease! Nobody has to sell their house and be homeless, just please donate $5.00 in David's name......the cost of lunch.
All you have to do is go to this link ----->

http://www.lunchforlife.org/ourfamilies.asp?i=177

and tell them that you would like to donate in David Norris's name. Thank you all again...

Tuesday, August 9, 2005 11:00 PM CDT

It is a bright sunny day in New York City and David is dressed up like Batman. Alexa is chasing him and I kept yelling "Don't go too far!". I can hear them giggle. Their laughter is so rich, I'm sure it's the kind that if you bottle it up, it will be fattening. I'm smiling....I closed my eyes and started singing What a Wonderful World.

When I opened my eyes, I was laying down on the pull out chair and the first sight I see is David on the hospital bed not looking like himself, tubes every where. The ventilator is back on the higher setting and he is once again paralyzed, the doctors put him back again on Vecuronium drip (paralytic med) so his lungs can get some more rest. After I updated last time, the rest of the night was so bumpy. His Hgb level went down, so he ended up having a blood transfusion. His blood pressure also kept dropping so once again he is back on the Epinephrine drip (Adrenalin) to keep his blood pressure stable. He also had a fever all night long so his heart rate was constantly on the high side. He looks so fragile, all I want to do is hold him. It's been 20 days since the last time I held him tightly in my arms, , 20 days since I saw his sweet smiling face, 20 days since the last time I heard his innocent voice call me Mama, it's just been 20 days of pure hell for him! I wanted to go back to sleep hoping that I will once again dream of him, healthy, happy and being himself.

The doctors just came in to examine him and to give me a little update. Yesterday, he had an abdominal ultrasound and they found that the high bilirubin level is from his gallbladder. I just learned that the liver produces bile that flows through a series of tubes called bile ducts and collects in the gallbladder. The gallbladder concentrates and stores the bile made by the liver. Bile is used by the body to digest fats. When bile is needed by the digestive system, the gallbladder squeezes it out through the Common Bile Duct into the duodenum (first part of the small intestine). They said that sometimes when a patient is sick or has an infection, the gallbladder holds on the bile and it produces a high level of bilirubin, which makes the skin and eyes yellow, that's why the question about hepatitis was brought up.
Last night, he ran a couple of fevers, up to 38.6 celcius(101.1 farentheit) not that bad, but it is still a fever. He also had a problem with his blood pressure running low almost all night, they call that Hypotensive, a word that I have heard about 1 thousand times about David. The doctors once again are thinking he has sepsis. So today, they removed his central line that was put in on the left side of his groin. And they put a new one in on the right side of his groin. What is a central line? It is a tube that is surgically inserted into the superior vena cava (a large vein). For those of you who have seen David, it is the "tubies" that comes out of his chest (which by the way the doctors here removed in the beginning when he went into Respiratory arrest) . I am noticing that the doctors here have a pretty good practice of removing a central line as soon as the patient gets a fever. They make it seem like it's a piece of cake to take one out and put one back in. Wondering how they put one in? Well, I am not allowed to be in the same room when they put it in, but they have explained the procedure to me very well. The catheter is inserted through the skin into a vein often in the neck or chest (in David's case, the second time, it is in the groin area). It is threaded through the vein until it reaches a large vein near the heart called the superior vena cava. The first time David received his first central line, he went under general anesthesia. But today, he is pretty well sedated, so a local anesthetic is not even required. I was kinda worried that he might feel pain because he maybe paralyzed right now and it may seem that he is fast asleep, but he is very well aware of his surroundings. I know that he can hear me when I talk and sing to him and feel my hands giving his little legs and feet and hands and fingers a massage because his heart rate and blood pressure goes up a little.
David was also put back into his stomach again to make sure that whatever fluid he has in his lungs are being moved around and not just settling in one area. Plus David likes laying on his stomach better, it shows on his stats. It took 3 doctors, 2 nurses and 1 respiratory therapist to move him today. Thank you all for being so gentle with David!
Towards the evening, the doctors were able to lower the settings on David's ventilator (PEEP 8 OXYGEN LEVEL 50-HE WAS AT 100 LAST NIGHT! and RESPIRATION 22-the ventilator is doing all the breathing for him, since he is paralyzed.
Also, the fluid/mucus stuff that they suction out of his lungs are almost clear now, instead of the bloody mess I was seeing the last 2 days.
All these things are great news, but the doctors are still saying that David is still very ill and to anticipate on being here for weeks. Those words echoed in my head for the rest of the day. And yesterday when I went to buy a slice of cake I broke down, and lost it.... it was because I never eat cake without David. I cannot imagine this lifetime without sharing my slice of cake without him. I took a deep breath and said to myself that nothing will crush the little hope that I have been holding onto. Though this journey has been a pretty bumpy one, David is still hanging on. And I know that he will eventually reach the end, eventhough it is a long ride and he will live happily ever after.....The End!
Remember.....Expect A Miracle....tomorrow is another day.......
Thank you all for continuing to check up on David, all your prayers and messages are very special to us. The messages that you write gives me the strenghth everyday coz there is nothing like the feeling to have so many people out there who care and love David soooooo much! Thank you all!
Deb---Thank you for visiting us yesterday and for bringing gifts for the kids and the big kids! I can't wait for you to meet David when he wakes up!
Ronda and sister ----thank you for sending us spending money, You have always been so thoughtful and compassionate towards us since the very beginning. You are a wonderful person and we are very glad to be your friends!
p.s.
Alexa is having a great time here in New York! She knows that David is very sick and she has been singing, drawing and coloring for him to make him feel better. When it is time to go to the house, she gives David a kiss and whispers in his ears how much she loves him....she has also met some new friends at the Ronald Mcdonald house and she is very happy to be here, she said she wants to be a city girl!
Jerry has been taking such good care of Alexa and he is being so involved in David's care. When he is here at the hospital, I just sit back and watch because he has been incharge. I am so proud of how he has been asking the nurses and doctors questions and he is just being the best advocate for David. He even knows David's every single medications and their doses and how many times a day! It is going to be very hard for him to go back home. Hopefully, David can be off the ventilator before Sunday (Miracle) He's been the one incharge of David's positioning when they move him and right now, it is 1:30 am and I was wishing he was here because we had to change the bed sheet and that means we moved David, without Jerry, it was hard.
The nurses here have all been great. Thank you all for doing such a great job taking care of David and for being so gentle. And for putting up with me asking you all everytime you come near him, "what are you doing?" Thank you, the doctors are right, you all have been trained very well....every single one of you!

Sunday, August 7, 2005 7:01 PM CDT

Hello everyone!
David is heavily sedated right now, the doctors have raised the dosage of the narcotics (sedation) he's been receiving because he seems to have developed a tolerance for them.
Today nothing much has changed, the ventilator settings are still the same...PEEP-5, RESPIRATION-14, OXYGEN LEVEL-50
On his monitor his stats are: HEARTRATE-161, his bloodpressure varies and mostly stays at 110's/50's.
His OXYGEN LEVEL-95 and his RESPIRATION-32 (the amount of breaths/minute) All these numbers may not mean anything to some of you, but for me, this is what David is all about for now. These numbers are good, except for the heartrate is a little high. For a kid his age, a good heartrate is between 70-140. The doctors today came and told us that eventhough he is tolerating the lower ventilator mode, he is not going to be extubated anytime soon due to the bloody secretions that the nurses suck up from his lungs. He needs a little more time for his lungs to heal.
He is receiving a platelet transfusion right at this moment (everyday)because for some reason his platelets counts keep dropping, and nurse Ellen just tested his urine positive for blood. I was doing some research the other day and I read that too much platelets transfusion sometimes causes leukemia later on in life. Great huh? That's another thing I have to worry about! As is if I don't have enough already on my mind! I told myself today that I am not doing anymore research until David is fine! Sometimes ignorance is bliss. There's one good news though, his HGB level is at 11.3 (the doctors want him to be at 12) since that's close enough, he hasn't received a redblood cells transfusions today. But then, it is only 8:45 pm, let's all keep our fingers crossed. The less blood transfusions, the better.
Today was a quiet day for David, except for when we turned his head to the other side. Moving his head is such a big deal! There are so many people involved, a Respiratory therapist (Michelle), nurse Ellen, the doctor and of course Dad and I. My heart hurts so bad for David everytime we move him or suction him, he opens his eyes and tries to say "Mama". But since he isn't really all there himself, he only does it for a few minutes and goes right back to sleep. I hope he isn't asking why this is happening to him and why is he being tortured and punished for such a long time. I just hope that he won't remember any of this when he wakes up, IF he did, I hope that he just thinks of it as a really bad nightmare and know that Mommy and Daddy are here to protect him.

HOW DO I FEEL?
Fear of the unknown. That's what I have deep down inside. Is David going to go home with me? I don't know.... I have tried so hard to be strong but I am starting to fall apart. I can feel my eyes filling up with tears, but I am afraid that if I let go it will not stop. Deep breaths....
I have no words to describe how I feel when the best doctors in the nation comes to me and they tell me that they have no guarantees about David's recovery. Whatever is happening to David is a puzzle to them, a mystery. I am angry, not particularly at anyone, it's just that I thought doctors are supposed to give me the answers, but instead they look at me and shrug their shoulders.
Physically I am fine, but I am emotionally exhausted. I used to yell at Jerry about not wanting to talk about David's condition, but that's what I have found for me to be helpful right now (that and staring at a blank wall). For the past few days, I kept telling myself that maybe if I don't talk about it, it won't exist.
It sounds like I am in denial....but really what I am, is just trying to hold on to HOPE. I always tell myself that when in doubt, have hope. Where there is hope, there is life.
David continues to progress a tiny bit everyday, and that's what we want. His progression maybe very slow but he is getting better.

THANK YOU ALL FOR YOUR CONTINUED SUPPORT AND PRAYERS. I finally had the chance to read all your messages and the care and love you all have for David and our family had brought me to tears. I am so blessed to have such great friends and family who are willing to go out their ways to help us out. THANK YOU ALL!

Always remember to EXPECT A MIRACLE.


p.s.
Thank you Jessica and Kenny for the yummy treats!

Friday, August 5, 2005 4:11 PM

Sarah says that David is doing well. His stats are improving since he has been moved onto his belly. The fluid in his lungs was trapped in the back, so by him laying on his belly, the fluid is moving. They have stopped the paralyzing meds, so David can move his hands and open his eyes, when he feels up to it. He is still constantly sedated. They have lowered the peep to 5 on the ventilator and he is recieving good oxygen levels. David is on 5 antibiotics and recieving blood and platelets daily.

Davids billiruben has been high, so the doctors are testing him for Hepatitis. David is yellowing on the skin and eyes. His liver is slightly enlarged and not functioning well.


Thursday, August 4, 2005 9:30 PM

Hello everyone,

I called Sarah a little while ago and here is the update. On Wednesday they did a bronchoscope (a tiny camera placed down the mouth to look at the airways of the lungs and to collect lung secretions and tissue). The outcome of this procedure is that David has suffered pulmonery hemmorage (bleeding of the lungs.) He is back on the paralyzing medicine. They have also put him back on the maximum ventilator setting. There is no treatment for pulmonery hemmorage, so they have returned him to maximum life-support, to rest his lungs. The doctors are saying that this is a mystery, because it is not surgery related.

Sarah and Jerry are both having a difficult time right now and do not really want to talk about what is going on. It has been a little over two weeks, with David in critical condition, and it is starting to get to them.

I thank all of you for your continued support for their family. Thank you to the Badman Family for the care package, Sarah says it was awesome. Thank you, Tracy Stutzman, for donating the bracelet to auction on ebay. And thank you to all of you who sign David's guestbook. This website has been very special to David (and to the family), even though they may not have time to read your messages now... they will eventually.

Stephanie

Monday, August 1, 2005 9:34 PM CDT

Sarah takes back the cancer free news:

David is not cancer free. Dr. Kayton (Asst. Surgeon) told Jerry and Sarah today that David's near by lymph nodes have been affected by the tumor. So David will be going through more chemo when he recovers from surgery. How much chemo?? They don't know yet.

The doctors tried the ventilator on practice mode or CPAP, but was not ready to breath on his own. He was breathing too rapidly. They will do more practice test tomorrow. FYI... CPAP (Continuous Positive Airway Pressure) The doctors have restrained David's arms, because when he wakes up he doesn't really know what is going on, and he tries to pull the tubes out.

Hopefully I will relay good news tomorrow..........

Stephanie

Sunday, July 31, 2005 8:50 PM CDT

Hello everyone,

David is making slow, but steady progress. There still is the mystery of his little fevers here and there, and his counts going down. This is most of the stuff Sarah and I talked about when I called her last night.

--David is really awake now-- Sarah is so happy, because he even smiled like 3 times today.

--He has found two nurses that he responds to really well, Thank you Nurse Karen & Nurse Bency... David seems to love you.

--He is recieving blood pressure meds, sedation meds, antibiotics, and pain meds.

--He is receiving platelets and blood daily. Due to the mystery of his counts dropping. His WBC got all the way up to 6.7 (first time since beginning chemo), but then it dropped to 3.5. Why???

--He has been lowered on the ventilator and is now breathing with the ventilator and not against it. So little by little they will start to give David more breathing responsibility. His lungs are not yet ready to breath on their own.

--The doctors are feeding David Pediasure through his engi(something) tube. He has lost a lot of weight, so they are trying to pack it back on.

--He has had two great nights in a row (maybe three, because this is news from last night)

--David says that he is MAD at Sarah. She asked him if he was mad at her and he nodded yes. But he smiled, don't forget, so maybe he is getting over it.

--He is starting to get bed soars on his wrists and ankles. They are moving him a lot, but it really hurts him.

--He wants drugs. He heard the nurses ask another little girl if she needed more pain medicine, and David nodded yes. He thought that they were talking to him. :)

So this is the news about David. The doctors are saying that David still has a long way to go to recover, but just as long as he progresses to recovery, everyone is happy.

THANK YOU SECTION:

First, to all of you that have been following David's progress. Thank you for all of your prays and well wishes. They are working!!!

Alexa got to meet Destiny's Child. They came to the Ronald McDonald House and decorated cookies with the children. They also will be donating proceeds from their Long Island concert to the Ronald McDonald House. This is great for all the families staying there, as the house runs on donations. The RMH told Sarah that the rest of her stay will be taken care of. So she only had to pay for 11 days. Thank you to the RMH, volunteers, and staff.

DeCola and Lee families, thank you for the care package. It is full of stuff that Sarah really NEEDS!!

Jerry and Allison Ford built David a bear. He smiled at it when Sarah showed him. Thank you for a very important smile, it must have touched his heart.

Well that is about all. Sarah really wanted to update, but it has been hard for her to find the time. Thanks again.

Stephanie

Wednesday, July 27, 2005 1:14 PM

Sarah says, "EXPECT A MIRACLE"


Tuesday, July 26, 2005 9:00 PM
I just recieved an update from Sarah. The doctors are probably going to remove David's central line tomorrow. They are running out of answers. They have told Jerry and Sarah that they can not guarantee a full recovery. Sarah is being unbelievable strong and couragous. She has not cried and does not want anyone to cry to her, because she says "David is going to be just fine." Please, please continue to pray for David.

Stephanie

Tuesday, July 26, 2005

9:00 PM I just got an update from Sarah and the doctors will be removing David's central line probably tomorrow. The doctors are running out of answers. They have told Jerry and Sarah that they can not guarantee a full recovery. Sarah is being unbelievably strong and couragous. She says that she will not cry and she does not want anyone to cry to her, because she says "David will be just fine." Please, please continue to pray for David.


(From: Sarah)
Surprise everyone!
I finally found a few minutes out of my pseudohectic life. Today is Jerry's birthday and he is about to receive a pretty good present from the doctors. The results have come back from his bonemarrow test. Today, David is free of cancer. Such great news huh? But I am not celebrating quite yet. I have sat for 7 days waiting for David to wake up. I know that any day now, he will. It is so hard to watch him just lay there, tubes coming out everywhere. The doctors came this morning and told me that they might be taking his central line out, just because they think that he has an infection from it. He hasn't had a fever in three days but since his white blood counts, platelets, and hemoglobin level have been dropping along with a low blood pressure, they suspect sepsis. But they won't be taking it out until something grows from his cultures. For now, just a bunch of antibiotics, and waiting around.

They have also put him back on almost the maximum setting on the ventilator. He is on a constant paralyzing medication and they've also put his blood pressure medication back on. He is on Lasix to help him pee out all the fluid that they are pumping into him. His face is not swollen anymore, but his legs, thighs and scrotum are. Thank God he is now constantly being sedated. There is so much more for me to describe what David has been going through but I am out of time. Please continue to pray for him. Thank you all for your messages and cards and gifts and flowers.

I don't know when I will be updating again myself. I just want to quickly thank Stephanie for updating David's website...sorry you have to cry so much. I promise those sad tears will be replaced with joyful tears soon!
Thank you also for The Bess' for the silky pajamas and the other gift, I know that David will never want to take them off, just like the first ones, he wore them for three days straight and I had to literally peel them off of him.

later......

Tuesday, July 26, 2005 7:38 AM

Hello again, I spoke with Sarah last night, and David is still progressing. He's little body is full of tubes though. One tube in each nostril, and tubes on practically every artery on his body, and don't forget the one down his throat. Poor little guy, but Sarah assures me that he is looking better everyday.

The doctors took him off of the nitro??something (I forget the name) medicine. So his oxygen level has been at about 90, and it should be at 95 or higher. His blood pressure and his heart rate have been better, heart rate is between 115-120.

Thanks for checking up on David and for all of your prayers. There must be angels all around him.


Monday, July 25, 8:00 AM

Ok... David had another good day yesterday. The doctors had to put David back on the paralyzing medicine and the blood pressure medicine though. David is such a fighter that he was trying to breath against the ventilator. The doctors don't want that, and it was making his blood pressure out of wack too. They are slowly weaning him off of the ventilator. It is still the heavy ventilator, but they moved it down a notch.

But as far as looks, Sarah says David is looking good, he is less swollen. Really only his lower body is still a little swollen. His eyes and lips all look normal.



Saturday, July 23, 9:30 PM

Sarah says that David had another good day today. Everything is moving along... slowly, but surely. The doctors took him off of the paralyzing medicine, so when he feels up to it he can breath with the help of the ventilator.

When I talked with Sarah she was moving a mile a minute, trying to get everything done (laundry, dinner, showers) and get back to her baby. Alexa and Jerry had father-daughter day today, they won a trip to a water park in Pennsylvania. Alexa got to see David last night. She kissed him goodnight and told him how brave he is. She is the sweetest big sister David could ever ask for.

Sarah says that the Ronald McDonald House is great. All of the people are very nice, and it's just great to have a place like this to call home for a little while. Alexa even got to have a piano lesson.

Until tomorrow... Sweet dreams David!

12:00 PM

I talked to Sarah very quickly around 10:30 this morning. David is still in critical condition, but the doctor's say that he is headed in the right direction. So hopefully things will start to look a lot brighter, just like his little smile.


Friday, July 22, 1:00 PM

I spoke to David's grandma at 1:00 pm and she says that David did really good thru the night. When Sarah calls I will update again.

Thursday, July 21, 8:00 PM

A lot has changed from earlier this morning until now. David is in critically stable condition. His blood pressure is stable. They are slowly taking him off of the blood pressure medicine. They are not removing the ventilator to suction the fluid from his lungs, because it takes him about an hour to recover from that, and they don't want to risk his blood pressure dropping now that it is stable.

David still has a fever, but it was 103 and now is about 101. Originally he was to only be on the ventilator for 1 day, and now he will be on the heavy ventilator for 3-5 days. He is a lot more swollen today, his eyes and lips are swollen the most. They had to give him artifical tears because of the swelling in his eyes. Today they did an eckocardiogram, but Sarah has not gotten the results yet. David's heart rate is usually between 159-170.

Sarah seems a lot better this conversation from the last. She has said that she is not nervous everytime I talk to her, even before the surgery. She is very pleased with the knowledge and care of the doctors. The day nurse was great with David. She has been very gentle and caring, which must be hard, since she deals with this kind of stuff all day and everyday.

Good night and I will update again tomorrow when Sarah calls.

P.S. If you need to call Sarah, David's direct phone line is:
(212) 585-7419
The hospital number:
(212) 746-5454 Room# 403A

P.s.s. Sarah will be there tonight, but will be leaving in the morning, so she asked that you not overwhelm Jerry with calls tomorrow.

Thursday, July 21, 2:00 PM

Well... I just spoke to Sarah at 2:00 pm, and the doctors are saying that David is in unstable condition, and that he is very sick. After I talked to Sarah this morning, David stopped breathing. They had to resesitate him with the breathing pump for about an hour, because his lungs wouldn't inflate with the ventilator. His oxygen level got all the way down to 27. He stopped breathing because of excessive fluid in his lungs. They pumped 300 ml of blood and fluid from his lungs, before he was put on a heavy duty ventilator. Because of the blood in his lungs, he has already recieved 2 platelet transfusions.

David currently is sedated, but he is still feeling everything. When anyone touches him or moves him, his blood pressure and heart rate shoot up. Sarah had to change his dressing and was talking to him the whole time, telling him that it is ok... it's Mommy, and his heart rate would go back down. She said his finger tips and his lips are blue. He is just having a hard time recovering.

Both Jerry and Sarah stayed with him all night. Luckily Jerry's Mom flew to New York to help, and she was with Alexa.

Please pray hard for David to fight his way to a full recovery.

P.S. Sarah always asks for me to read the guestbook messages to her, they really mean a lot to her. So on her behalf, I will thank all of you for sending your well wishes to David and his family.


Thursday, July 21, 8:30 AM

Sarah called at 4:00 am this morning to vent. It seems that David's recovery is not going as smooth as the surgery went. He is running a fever. He had to have a tube put down his throat to remove fluid from his lungs. Also, he has recieved no pain medication, because his blood pressure keeps falling everytime they give it to him, so they stop.

This is just very hard for Sarah and Jerry to see their baby in that condition with no releif of pain medication.

As always, I will update if I hear anything.

Wednesday, July 20, 2005

UPDATE: Sarah called at 9:30 pm and they had an emergency. David's blood pressure dropped dangerously low 72/15, but they have stablized it. Please continue to pray.

UPDATE: At 7:00 pm the surgery was complete. The tumor has been completely removed..... YEAH!!!! David is doing great the doctor's said that he did extremely well during the entire 6 hours of surgery. He lost very little blood, only 350 ml of blood was given to him (about the amount of 2 transfusions.) He will be sedated for the rest of the night and will remain intubated until his lungs recover and he is able to breath on his own.

Originally, the aeorta was what Dr. LaQuaglia thought would give him the most trouble, but it wasn't. He had to call in a neurosurgeon to help him during the surgery, because the tumor was really stuck to the spinal cord. This became the most difficult part of the surgery as they peeled the tumor from David's spinal cord.

Dr. LaQuaglia said that the tumor originated from the sympathetic nerve, not the adrenal gland, as originally thought. The effect that this will have on David is that his right leg will tend to feel warmer then the left.

The adrenal glands, kidney, and appendix are all ok. Normally the appendix would have been removed, since his right side is were they went in, but the doctor did not want to remove it, for the greater risk of infection.

David will hopefully be in no pain thanks to an invention that alot of you may have experienced, an epideral. Sarah will be able to administer his drugs for pain by a simple press of the button.

David is probably taking the most expensive ride of his life, as I type this entry. He will be transported by ambulance, with Jerry, to the ICU across the street. But he most likely will not even remember it. He will be moving to New York Presbytarian Hospital. He will not be at Sloan Kettering Memorial. I will include the address to New York Presbytarian at the end. If you would like to send gifts or cards of support, you can send them to the hospital or to the Ronald McDonald House. Only one parent is allowed in ICU, so the other will be at the house.

Speaking of parents... they are doing good as well. Sarah seems to be running only on adrenaline. I don't think it all has hit her yet. Today is her birthday, so I think it will be one that she will remember forever. So a very special Happy Birthday to her.

The results for the bone marrow asperation will be back in 3-5 days. Since David's tumor has been removed, and all of his other test have been negative for cancer cells, if his bone marrow is clean he will be in remission.

Your prayers and support are working. One more milestone completed.

New York Presbytarian Hospital
525 E. 68th St.
New York, NY 10021

UPDATE: It is 2:30 pm and the nurses have relayed the message that the bone marrow asperation is complete and they are moving forward to remove the tumor. They will be updating again between 3:30 and 4:00 pm.

Wednesday, July 20, 2005

Hello everyone,

Sarah just called and wanted everyone to be kept up to date. David went into surgery at 1:08 pm. They will be removing the tumor from his abdomen by going thru the right side of his chest under his rib cage. They also will be doing a bone marrow asperation, front and back on each hip bone. The doctor's say that the surgery will be about 6 hours long. The nurses will be updating Sarah and Jerry about every 2 hours on David's progress, so I will update when I hear from them.

Thank you to everyone for your continued support and prayers for David and his family.



Stephanie

Monday, July 18, 2005 2:26 AM CDT

It is very early in the morning and I just wanted to remind everyone of David's surgery----July 20th.

We are leaving to New York in a couple of hours and I can't sleep. His pretesting will be at 8 am tomorrow, surgery will be the following day. Please keep David in your prayers. This is a pretty major surgery, pray that everything will go smoothly and recovery will be quick.

I don't know when I will be updating next, hopefully soon!

David and I will be staying at the Ronald Mcdonald House.
This is the address:

Ronald McDonald House
405 East 73rd Street
New York City, NY 10021
Phone: 212 639-0100
Fax: 212 472-0376


Memorial Sloan-Kettering Cancer Center
1275 York Avenue
New York, NY 10021

Main Telephone Number
212-639-2000


THANK YOU STEPHANIE, CESAR, CYRUS, CESAR JR., CIERA, ALEX, JENNIFER, MICHELLE, JOHN, AND ASHLEY FOR THROWING DAVID A SURPRISE UNBIRTHDAY PARTY! HE HAD A GREAT TIME!

FRIDAY, July 15, 2005

David had his audiogram today. There is more hearing loss due to the Cisplatin and some of the antibiotics he was taking. The right ear lost a lot more than the left ear. Dr. Walberg told me that from now on, when David is not paying attention to what we are saying to him, it is not that he is ignoring us (like a normal 4 year old would do) it is because what we are saying to him is not clear. He still hears us, but if we don't want to repeat what we are saying, we have to look him in the eye when we talk to him. It is not yet that bad to where he needs hearing aids. Let's pray that it never gets to that point....


Thursday, July 14, 2005 9:08 PM CDT

It was a long day at the hospital today.
Starting at 11:30, Doug had his end of treatment party at Dr. Hajjar's office. It was a great start for David. Doug was his nurse tech today, he helped Maggie take his weight and he even went in the room with David when it was time to get his blood counts. He was so happy that his friend Danny was also there. The only thing is that it was so hard to get them all in a picture together. We ate chocolate cake and chicken wings and mountain dew---all Doug's favorite and also David's.

After the party, he had his CTscans, David had about 10 of these tests done before, but when I spoke to the nurse when I was making the appointment, she said that he will need to have an IV line inserted in his arm so they can inject the contrast material at the rate it needs to be administered. Some radiologist will not allow intravenous contrast to be injected through a central line (the tubing that comes out of David's chest) because of the danger of power injectors using too much force. David's central line can only handle .8cc/second and injecting the contrast material needs to be at 3cc/second. That is too much force for David's line and they could blow it. But the tech today administered the contrast material in David's line at 1cc/second and everything was just fine. The results of the scan says:

EXAM: CT ABD W

FINDINGS: The large retroperitoneal partially calcified tumor to the right of midline patially encasing the aorta and displacing it to the left is again identified. The inferior vena cava is not visible within the mass or inferior to the mass. The lesion is slightly smaller from last time measuring 5.4 x 6.5 cm versus 5 x 8 cm last time. Note it measured more inferior, measuring 5.4 x 6.3 cm versus 6 x 7 cm last time.

No liver or splenic lesion. No parenchymal renal lesion.

Visualized lung bases are clear. No bony abnormality is demonstrated.

IMPRESSION: PARTIALLY CALCIFIED RIGHT RETROPERITONEAL MASS SLIGHTLY SMALLER THAN PREVIOUS EXAMINATION THOUGH IT REMAINS RELATIVELY LARGE AS MEASURED ABOVE. IT CONTINUES TO PARTIALLY ENCASE AND DISPLACES THE AORTA.

EXAM: CT PELVIS W

COMPARISON: 6/7/05

FINDINGS: Retroperitoneal mass again demonstrated extending into the upper pelvis without significant change. No lower pelvis extension. No free fluid. No significant change in pelvic component.

IMPRESSION: STABLE PELVIC CT SCAN.

David also had an EKG test and what concerns me the most is where it says Probable right ventricular hypertrophy.

He also had an ECHOcardiagram test but I won't know the results until tomorrow.

I wasn't able to attend the support group meeting tonight because I got home from the hospital at 6:30 and was totally exhausted. I was trying to take a nap with David on the couch but the phone wouldn't stop ringing. I am going to bed as soon as I am done updating David's website. There is still so much to do before we go to New York. I will start my day early tomorrow.

Goodnight everyone...

love,
Sarah

Wednesday, July 13, 2005 1:31 PM CDT

This is my break, I am eating my lunch, playing with the dogs, and updating David's website at the same time. I have been on the phone most of the day, I had to make David's appointments for his CTscans, ECHO, EKG, audiogram, and his dr's appointment(CBC) for tomorrow. I have learned to be multitasking eversince I have became a parent. And I might say I am pretty good at it! You can even ask my friend Stephanie, I can talk on the phone and wash the dishes at the same time. My husband on the other hand is another story. He can't even walk and talk at the same time(seriously) Majority of men that I know of, can only do 1 thing at a time. Must be why woman are the mothers. I just wished we had more than 2 hands. I can just imagine what I can accomplish in one day. It will definately make me stop wishing there was more than 24 hours in one day.

Our friends Beau, Dave-O and a couple of their friends stopped by the house to visit last night. They played with David and Alexa. They had such a great time playing with a balloon that Alexa blew up. They also presented David with a tupperware full of money that they have collected. It was such a great surprise! Thank you Custom Kar Crafterz, Audio Proz, the servers at Chilis of Ocala, and to everyone else that contributed out of the kindness of your hearts. David will definately have a great time shopping at Toy's R Us in New York!

How is David today?
He is doing great, just like always! He still can't believe that he has been home for almost 2 weeks now, without being admitted to the hospital. Every morning when it's time to put his play clothes on, he asks me if it's time to go to the hospital. When he saw me packing yesterday for our New York "trip", he asked me "Are we leaving to go to the hopspital right now?". I don't really know if he likes the hospital or not, but he didn't seem sad, instead he was kinda excited. I am so glad that he doesn't find the hospital a scary place to be. He has grown so much since he started this journey, physically and mentally. I can't be any more proud of how cooperative he has been with all the procedures and the nurses and doctors he's dealt with.

Thank you all again for visiting and checking up on David.
And thank you for all the phone calls and emails and for asking me, how I am doing today.

I find each day too short
for all the places I wanna go,
All the books I want to read,
and all the friends I want to see,
The longer I live,
The more my mind dwells upon the beauty
and the wonder of the world.
-unknown-

love,
Sarah

Tuesday, July 12, 2005 1:51 AM CDT

Another great day! I just wanted to share with all of you an email I received from my friend Stephanie. It was a great way to start the day, with a good laugh. I know that a lot of you check in on David first thing in the morning, so I hope this starts your day right.

New Cell Phone Law
According to a proposed new law that would go into effect Jan 1, 2006 you will no longer be able to use a cell phone while driving unless you have a "hands free" adapter. I went to Circuit City and they wanted $50 for a headset with a microphone for my cell phone. Having a friend in the cell phone business, I talked with him and was able to come up with an alternative, working through Office Depot.

These kits are compatible with any mobile phone and one size fits all. I paid him $0.08 each because he bought in quantity. Then we tried it with Motorola, Sprint, Verizon and Nokia units and they worked perfectly.

A photo is attached click here
& take a look and let me know if you want one. Also, forward this to anyone you know, who has a cellphone, and who may want one!

I will write more later....

Sunday, July 10, 2005 2:36 PM CDT

Nurse Susan came at 12:30 today to draw blood for his CBC (complete blood count). I just got off the phone with her and everything is fine. He is not neutropenic anymore! Go David!!! His counts are very slowly going up so he does not need any blood transfusions. Yeah!!! I am going to get a good night sleep tonight!

I am so glad that he is not neutropenic anymore. I am planning on taking him to have fun before his surgery. He has been asking me to take him to Disney. I am also very excited to take him to the Give Kids the World Village next week and the Support Group meeting, this will be his first time because everytime there was something fun going on for the last 6 months, he was neutropenic and can only stay at home.

He is getting better and better everyday. Jerry was telling him about New York and that the dr's are going to take out his tumor. He is very excited! He kept saying "Yeyyy!!! No more tumor! I am going to New York City! That is where Buddy Elf's Daddy lives!" I'm glad that he's excited!

Thank you all again for checking up on David. I will write more later....

David's counts:
WBC 2.3
ANC 1656
PLT 67
HGB 8.8

Friday, July 8, 2005 10:02 AM CDT

Just a really quick update...

David's Counts:
WBC 1.4
ANC 770
HGB 9.1
PLT 52

David went to the doc's office yesterday and he is still neutropenic. Today is his 26th day from the first day he received his 6th round of chemo. His platelets are still low but his hemoglobin level is staying at a good level. The dr. said that when a person has received this much chemotherapy, their bone marrow takes longer and longer to recover. And the platelets are normally the last to recover.

David's next appointment is to come back on Monday. That is 4 days from yesterday. With his platelets this low, I wouldn't be able to sleep. Especially not being sure if he is going to go up or down. This was the same situation last week. But this time his ANC is on the rise. I asked the doctor once again, just for my peace of mind if he can send a nurse at home to draw blood on Saturday or Sunday and do a CBC (complete blood count) just to be sure. But he assured me that he is not going to go down. And he does not need a a blood count. I believed him. But that doesn't mean I am not going to be worried. As soon as I got home and told Jerry what's going on, I called the doctor back and he said he will send a nurse this weekend to do blood work. Thank you!

He is doing great though. He is running around like a maniac! And all he wants to eat is icecream with caramel on top, breakfast, lunch and dinner, and in between! He doesn't want to drink anything but grape or orange soda either. I told him yesterday that I think he should have some water and he replied to me, "Mommy, water's not helfy. Ooooooonnnnnlllllyyyyy soda!" He has been telling me lately what is healthy to eat or not. Of course to him, the healthy foods consist of chocolate, gum, icecream, monster truck gummies, and soda.

Alexa on the other hand, would ask me first if what she's drinking or eating is healthy. She has been telling David lately that sugar is not very good for his body, because it makes act him like a monkey. Obviously, anything that alters your personality is NOT healthy! But David argues back with her saying "Naah! Sugar is yummy! Right mommy?"

David just woke up and he said that he had a nightmare. There were black monsters, with blue dots. And they were dancing the robot and saying "I love David". Those were only two sentences, but It took me six questions to get those answers from him.

Gotta go! He wants cookie crisp cereal with milk.

Thursday, July 6, 2005 05:35 PM CDT

Hello everyone,
It's me David!
I just got out of time out, because I bit Alexa in her hand today. Oh boy! I haven't been in time out since I got cancer. I forgot what it was like! My Mommy made me turn off my NEW game and she made me sit in my room on the floor doing NOTHING!!! I got extra minutes, the rule is 1 minute per year. And I am four years old, so normally I go for 4 minutes. But since I really hurt Alexa, I had to sit for extra 6 minutes! It seemed like a looooooonnnnggggggg time for me! And to top it off, I wasn't allowed to play my game until after my Daddy got home! Don't worry, I told Alexa I'm sorry and that I would never, ever bite her again! I love her, she's my big sister, you know!

Today, my Mommy took me with her to visit our friends at Dr. Hicks office. They are so nice over there! I got a pencil before I left and Michelle gave my Mommy a bag of money for me! Wow! It had over $40.00!!!My Mommy took me to gamestop and I bought the Lego Starwars game for my Playstation! This game is so awesome! The staff at Dr. Hicks office had set-up a donation box for me and whenever my Mommy comes to the office, they give her all the money that the nice people put in the box! They have given me lots of money and my Mommy always would take me to buy a new game. Thank you Dr. Hicks and Michelle and Ms.Suzie and Lisa and everyone in the staff and to all the people that have donated money in my box! Oh, yeah and don't forget, Dr. Hicks told my Mommy in the beginning that whatever balance she had, not to worry about it anymore. This is a big help to my family! He is such a great orthodontist! Him and his whole staff in the office are all so compassionate and so caring. Oh, yeah please add Lisa to your prayers, she wasn't there today because she had surgery on her arm from an accident a long time ago. Michelle said she fell off her horse when she was a teenager. Ouch!

Ok, I gotta go! I have been sitting here in my Mommy's lap for lots of minutes while she's typing this. I am thirsty and we don't have any juice in the house. Only orange juice. Yuck! My Mommy needs to go grocery shopping. I hope she can go tonight when my Daddy comes home. I really want some real juice and some vanilla ice cream with Oreos in it! Yuuuummmmmmyyy!!!!

Peace out G!

love,
David

Tuesday, July 5, 2005 11:59 PM CDT

Nothing much happening today...

Tuesday, July 5, 2005 0:45 AM CDT

I hope that everyone had a great fireworks show and a Happy 4th of July.

What happened yesterday in the ER? Well, the IV team got David's lumen to work without putting tPA in it. They think that the end of the lumen must have been sitting on the side wall of his artery. Thank God! Right before we were being discharged, I asked the nurse if she could draw some blood to know his counts, I have been holding my breath since Friday coz of his platelets being low. I have no idea if it went up or down. I get really nervous when his counts are low and it's over the weekend. By now, I kinda know his schedule of how much his platelets drop especially when he is neutropenic. I was guessing Saturday he will be down to 49, Sunday he'll be between 20-25. When the results came back his platelets counts are 24. Patients normally don't receive a transfusion until they reach under 20. Doctor Hajjar gave me the option to come back tomorrow and get a transfusion at Kid's Stop. Of course I said no. In the back of my head it was really "Hell no!" Parents whose gone to that place, you all know what I am talking about! At 7 pm (we have been in the ER since noon)David was admitted to the hospital and received a platelet transfusion and a dose of Neupogen since his ANC came back to be 400. He was severely neutropenic! That, I didn't predict! I kept telling him, I was going to take him to Toys R' Us as soon as they unclog his line. Obviously, that wasn't going to happen! Especially since he didn't get discharged until 11:30 pm. Sorry David!

Friday, he wasn't neutropenic, so the doctors and nurses thought that his platelets should go up on it's own. I insisted on the dr to send me a nurse just to check his blood counts but they said no. I asked if I could come back on Monday, but the office is close...4th of July, duh! They said Friday. I said Tuesday. They said Thursday, the office is slammed. I said Ok. But then, I thought to myself, I wouldn't be able to sleep at all. That is 6 days of not knowing what his counts are. So I asked one more time, "Please just let me come in on Tuesday, I promise, David doesn't have to see the doctor. Just draw his blood, count it, then we'll go home. I'll even draw the blood, if I have to. Just give me the syringes." They looked at me and said they didn't hear what I just said. I guess, that was convincing enough for them. So David is on the Book for Tuesday for a CBC. I took a deep breath and smiled right before I left the office. I felt a little better. "4 days isn't that bad. He has ANC, so he shouldn't drop that fast." That's what I was telling myself so I wouldn't worry so much and I can just concentrate on having fun over the weekend. Then the clogged line thing happened on Sunday. Which was a good thing because 1st I found out he was severely neutropenic and I almost took him shopping. 2nd his platelets were really low. And 3rd I learned that when his line won't flush and has resistance and has no blood return, I should change his position and make him take deep breaths and cough then try flushing it again. If that doesn't work, I should take him to the ER, coz he might have a blood clot in there. You should never, ever put force when flushing a central line. You could blow the line and cause aneurism. Thank you IV lady for your advice!

I can't put the pictures up coz my camera broke and I need to get it fixed.

I will try to put pictures up tomorrow....David wants me to put this one for now.

Sunday, July 3, 2005 1:46 AM CDT

David got to go on Friday to the race!!! He had a blast!
I was of course nervous as heck! There were so many people out there! But it was so awesome! I know nothing about the car racing thing, and I learned a few things that day. By the way, we were all treated like celebrities! Thank you Discount Tire Company! We drove to the Ormond Beach store, and rode a Coach bus escorted by a couple of police officers. They took us to the Daytona International Speedway and we just went straight upstairs to one of the suites. No lines or crowds, Yeah! There, we were provided with drinks and food. We had two nice ladies taking care of us. And we also had a couple of tour guides to answer any questions we might have or want to know about NASCAR. Obviously, I had lots of questions since that was my first time. The other wives that were there, have been there before so they knew most of the answers to my questions...Thanx guys! Well, actually most of them were NASCAR fans. It seems as if everyone I talked to were fans, even Deena at the doc's office!

Anyways, David got to meet our race car driver, Reed Sorenson #41. David thought that he was so cool! Reed took a picture with us but David was a little shy. He also autographed David's poster and his badge. David was so proud of his souvenirs, he showed them to everyone who said hi to him, he kept asking "Wanna see my friend? Mommy, what's my friend's name again? Oh yeah, Weed! Yep! That's my friend!"

He also met some new friends. He specially loved Corrina, he told me when we were driving home that she was his girlfriend. I asked him, "What about me? I thought I was your girlfriend?" and he replied "You're silly!"

David's most favorite part of the day was when the cars crashed against each other. He thought that was cool! The expressions on his face were priceless. And this experience was awesome! Eventhough he wasn't really into it, it was a day of nothing but fun for him. No doctors, no nurses, no needles, no medicine! Yeah! Thank You Discount Tire Company for letting David come to this event!

I will add the pictures later...

SUNDAY Noon
I am off to the ER. David's blue lumen is not working. The IV team might have to put TPA in it. What is tPA? Tissue plasminogen activator (tPA) is a thrombolytic agent (clot-busting drug). It's approved for use in certain patients having a heart attack or stroke. The drug can dissolve blood clots, which cause most heart attacks and strokes.

Hopefully they can get it working. This hasn't happened since they put his line in January.
I will write more later....

Friday, July 1, 2005 7:07 AM CDT

Oh, yeah! Guess what? David's body miraculously made white blood cells while he was asleep so he was able to come home yesterday at around 7:30 pm.
Alexa was so excited to see him! They played and watch movies together all night! And I cleaned allll night!

I am getting ready to take him back to the doctor's office coz he spiked up a 103 fever again last night.
I just wanted to let everyone know what's going on. If his body made more white cells, I can take him to the Pepsi 400 today. I am so excited for him! He is going to love it!

And yesterday he also had a platelet transfusion. Thanks again Dad!

Wednesday, June 29, 2005 11:22 PM CDT

Today was a better day for David. He was a totally different kid today compared to the last few days that we have been here at the hospital. He was out of bed walking around, playing with Alexa, and wrestling with the pillows. I actually had to constantly remind him to watch his line to make sure he didn't accidentally step on it or worst, pull it off. I am always so nervous when he is connected and so active.

He had NO fever all day and just a few minutes ago, the tech took his temperature and it was 100.3, Uuuugggghhhh!!! Dr. Hajjar weaned him off 2 antibiotics today. The only one he is taking is the Fortaz. In order for him to be sent home, he has to off antibiotics for 24 hours and no fever for also 24 hours. Looks like we are not going home still. Also his white blood count is not going up. This round of chemo just really beat up his bone marrow, that's why he's taking a little longer to recover. Hopefully his body will miraculously make white blood cells tonight while everyone sleeps. Wouldn't that be cool?

He wants me to go to the "Vacteria" (cafeteria) right now to get him some more caramels and chips. By the way he didn't complain at all about his mouthsores today. That is a great thing!

gotta go!
I will write more later...

(for me to remember)
WBC 0.2
ANC
PLT 35
HGB 11.3<---Kenny, David has never had his hemoglobin level this high since he started chemo. You have awesome blood! Thanks again!

Tuesday, June 28, 2005 9:53 PM CDT

Nothing much happening today.
David has been moved out of his room for the third time since Friday. He is feeling a lot better, he was sitting up for a little bit and was actually laughing with Alexa.
It seems as if he is always so hungry. The mouthsores doesn't keep him from eating. Ms. Terri from Basecamp stopped by today and brought us lunch from KFC(Thank you Ms. Terri!). David and Alexa loves fried chicken! It's been a while since David had fried chicken so he was so excited! It was such a heartbreaking moment to watch him eat in so much pain. Everytime he would put a piece of food in his mouth he would cry out in pain...with tears in his eyes. I kept telling him to just take tiny bites, then swallow. He kept saying, he was fine. Then he would do it again. This is another great thing about David, he is a determined little boy, nothing will stop him...Not even mouthsores!


Jerry is here with us at the hospital to spend time and to bring me some more change of clothes and some movies and Lots of caramels for David and Alexa. The kids are so happy to see him. He really only has very little time to spend with the kids. Work takes most of his time, so every minute that he spends with the kids are very precious. Sometimes it's not fair that every day, I am the one vaccuming the dried up playdough between the couch cushions, following Alexa's list of which order to feed her babies and kept getting yelled at because I keep getting their names confused (it's because she has about 25 babies!)spending all day counting cars with David and explaining why the sky is blue...again for the last 10000th time, not to mention watching nothing but Willie Wonka and the chocolate factory 100 times a day, and he is the one getting accolades the moment he walks in the door! It's ok, I am not complaining. Just sharing some thoughts with you.

Speaking of sharing, I have to share with you what happened to my poor husband today. He had to donate platelets for David today and he fell asleep 30 minutes before he was done. The ball that he used to squeeze almost feel off his hand so he tried to catch it, bending his arm and forgetting that he had a needle stuck in it. He jammed the needle through his vein. He was in so much pain, so the nurse wanted to take him off the machine, but he was worried that he didn't give enough platelets, so he bravely finished the process. When I told Dr. Hajjar what happened today, he said that Jerry will have the biggest bruise on his arm. As if the track marks are not enough....Thank you Dad!

David wants me to write DAVID4. He said that's his name.
We are about to watch Fairytopia. So I will write more later...

Monday, June 27, 2005 9:53 PM CDT

I am happy to report that David ONLY RAN A FEVER ONCE TODAY (100.3 just now)

He slept really good last night and woke up today asking for pancakes. Today he ate about 20 starburst, cheese bugles, pizza, a few bites of cinnamon rolls and 7 caramels.

He wasn't feeling very good today but he didn't complain about anything. Doug came to visit him this morning and the usual big smile when he sees Doug wasn't there :(
He just laid in bed all day today and the only time he moved is when he has to pee. I have tried to motivate him to get up, even my big helper Alexa tried to play with him but he kept saying he was dizzy. Even Carlos is trying to make him get up, he is outside the glass door making funny faces and banging at the door with his dragon since he is not allowed to be around David. He is trying to get David's attention but I think it is Alexa's attention he wants. He did mention to me before that he thinks Alexa is cute....Jerry is not going to like this...j/k

David is still on antibiotics around the clock. It seems as if the nurses are giving him antibiotics every hour. He's only been awake for about 1 hour and the Benadryl just finished running, he will be falling asleep any minute so I have to cuddle with him now. He is about to get a blood transfusion in a minute (THANK YOU KENNY!)

It may seem that everything is so bad right now for him because he is so sick. But I want you all to remember that David is a strong, courageous boy. One of the stories that David used to love is the story about David and Goliath. He used to watch the Veggie tales movie about them when he was 1 year old about 12 times a day. And he used to pretend that he was David with the slingshot. Isn't it ironic that a few years later, he is battling to conquer a deadly monster in real life?

DAVID WILL BEAT THE MONSTER! But he cannot do it alone, he needs your words of encouragement, motivation and especially your PRAYERS! Thank you all for being there for him and for simply just being his friend.

(for me to remember)
WBC 0.1
ANC 6
PLT 111
HGB 7.5

Sunday, June 26, 2005 1:08 PM CDT

It is afternoon and David is pretty much in and out of consciousness. I predict that he is going to spend the rest of the day sleeping and waking up whenever he has to pee and wants something to eat.

He ran a fever all night as high as 103. It is still unknown at this point why he has a fever. He is on 3 IV antibiotics every 8 hours---1)Fortaz 700 mg
2)Clindamycin 150 mg
3)Acydovir 165 mg
And the dr. also added Diflucan for a possible fungal infection.

He still has sores on his tongue and today the sores on his cheeks are worst. (That's what Angela said) He wouldn't let me look in his mouth. The Magic mouthwash is still doing its magic. For those wondering what is in the Magic Mouthwash---it is consisted of Benadryl, Maalox, and Viscous Lidocaine. He is still eating and drinking. He hasn't complained about his mouth at all! He ate pancakes with LOTS of butter for breakfast and 7-up. He only wants to drink soda. It's ok with me because he is on continous IV fluid, normally I wouldn't let him drink this much soda at home.

This morning around 8 am, he woke up and said he had a dream about Doug. I asked him what the dream was about and he said Doug saved his life from the bad guys. He was trying to describe it to me, but I couldn't understand what he was saying. Then all of a sudden he said "I'm dizzy....Uhhhhhhhhhh". He fell back laying down and went right back to sleep. It was really weird.

Right now, he is asleep and we are waiting for his one of the antibiotics to finish so they can start the platelets transfusion. David has to take platelets from the blood bank this time coz Dad didn't have the chance to go Friday at the blood bank to donate. It will be fine. I just hope that he won't have any reactions with this platelets since his body is so used on receiving Dad's.

Dr. Hajjar also put David on Neupogen twice a day. This will hopefully make his body make more white cells faster so he can recover sooner.

He is saying that his throat hurts right now, so I have to get more Magic Mouthwash. I will write more later.....


(for me to remember)
WBC 0.1
ANC 23
PLT 20
HGB 9

Saturday, June 25, 2005 11:19 PM CDT

Well, David is still at the hospital.

I got to the hospital at 8 pm and thank God it wasn't that busy. I still had to do the paperwork thing and I waited in the car with Alexa and David for a couple of hours, since I didn't want him to catch anything in there. We watched Sharktale and ate Tostitos chips with nacho cheese, Alexa thought it was so fun. She said it is almost like when we are in the movie theater except that this time, we didn't have any gummie bears.

David finally got into his room at 3:30 am. The ER last night wasn't that bad. David had the same nurse (John)that put his very first IV on when he was first diagnosed in the ER, six months ago. He is an awesome nurse!

David spent the whole day sleeping today, and he has sores on his tongue but that doesn't stop him from eating. He is just always so hungry! Since he didn't eat anything yesterday, he lost 2 pounds, though. I know that he is going to gain it back soon. His appetite isn't the same when he is at home but he still demands food (actually snacks) all the time. I am so grateful for that!
He has Magic mouthwash to help with the mouth sores. It is magic, alright. I make him gargle with this stuff before he eats and he hasn't complained about his mouth.

David has not been in such a good mood since last night, by the way. But this morning, (I think it was morning. You know you loose track of time when you have been sitting in a little cube for a long time.) Doug called him and that instantly changed his whole entire mood. He was smiling after he got off the phone and asked for food.

Abbigail is here, getting chemo. She spent the day playing dolls with Alexa and blowing up "glove people". They had fun together. David on the other hand took a little while to warm up to her. He thinks that girls have cooties! Alexa left with Jerry and they went to Wet n' Wild tonight after Jerry's work and she got to ride in a limo...how cool is she? One of Jerry's customers let them have a free ride tonight since he's already paid his driver salary for the week and he has nothing else to do. He also offered to take us to the airport when it is time to go to New York for David's surgery. How nice is he?

David had another fever today so it doesn't look like we are going home tomorrow. I'm glad that Abbigail is here with him to play with coz it gives him something else to do. They had a really fun time playing with the "glove people". They both even gave them names. David's "glove person's" name is Bobby, and Abbigail's is Spiky. Hollie and I spent almost all night playing catch with David and Abbigail. We even took some pictures. I will share them with you when we get home. Both the children laughed and smiled, that was priceless...

Carlos is also here. He has been here for over a month now. I felt so bad that I couldn't let him in David's room to play because he had a little cough. With David having no immunity, a little cough or cold could turn into something else, and I want to go home soon! We made beads at the nurses station while David was taking a nap and Chuck also showed that not only is he one of the best nurses here on the floor but a creative one too! I know you are reading this Chuck, so I want to thank you for taking such good care of your patients and being a friend to all the parents. You are so considerate for turning the lights off on the floor when it is bedtime. I actually slept really good last night coz it's not so bright in here! It is almost a priveledge to have you as David's nurse.

David is screaming that it is bedtime so I have to turn everything off now. Thank you all for taking your time to visit his website and caring. To know that there are so many people that cares so much about David makes dealing with this "Monster" so much easier. Please don't forget to sign his guestbook, he loves it when I read to him the messages that you write.

I will write more later...

(for me to remember)
Plt 37
Hgb 9.1
WBC 0.2
ANC i forgot, probably 0

Friday, June 24, 2005 5:02 PM CDT

Hello everyone!
Just a really quick update....

I had just gotten off the phone with the dr's asst. in NY, and David's pre-surgery date is scheduled for July 19, and if everything is fine, he will be scheduled for surgery as soon as the next day. Looks like I'm celebrating my birthday in NY.

I have a lot of homework to do.

Right now, David is running a fever again, but this time his temperature is up to 101.3. It is time to head to the ER....

I will write more later....

Thursday, June 23, 2005 10:09 PM CDT

It is the third day since David started having a low grade temperature. But it is not consistent. It hasn't gone up enough for me take him to the hospital. Today, he went to the dr's office and received a dose of antibiotic. They split it between the two lumens to make sure if there's bacteria on either lumen it will be taken cared of. He also received a blood transfusion, since his hemoglobin level was very low yesterday. (THANK YOU JESSICA!)

While he is receiving a blood transfusion, nurse Maggie is constantly checking his blood pressure and his temperature. She even said that his temperature was funky coz it kept going up and down. They don't know if any bacteria has grown from the blood culture they took on Monday. Normally nothing grows. Yesterday was his tenth day since the first day of chemo, which is normally the time that he gets admitted to the hospital for febrile neutropenia---Dangerously low level of neutrophils in the blood (usually less than 500 cells per cubic millimeter) accompanied by fever; a condition that indicates that the patient may have a potentially life-threatening infection.(source: medical dictionary)

I am still on stand-by (for the third night in a row) to see if we have to go to the hospital tonight. Tomorrow he has another appointment again to go back to the dr's office for blood counts. It is our 4th visit this week. Every visit we have to pay a $25.00 co-pay. This is not cool! Our copay is actually not that bad compare to others who has to pay $50. It's still not cool!

I feel really bad for David coz he is acting just fine. He hates going to the hospital coz it is so boring. It seems as if when he gets admitted, he doesn't want to move out of the bed. Once in a blue moon he'll go to the couch, I don't know what it is. He gets really depressed in there.

If you all could just see how David is right now, you wouldn't even think that he is sick. After we came home from the doctor's he has been eating non-stop---real food!!!Yeah! When he asked me for kid cuisine and bagel with egg and cheese, I felt like dancing. Of course he still ate 5 cups of vanilla-oreo icecream today. And he even ate 1/2 of the big bag of Funnions. He also drank about 1/2 a gallon of strawberry lemonade<---he said, that is his favorite drink. He has also been playing and running around since we got home. He is right now watching Son of the Mask---for the 3rd time! He is getting mad at me coz I kept bothering him every 30 minutes to take his temperature. I also warned him that we might have to go the hospital tonight and he said "ok"...no whining, no arguments, he didn't even get upset! He is such a big boy!

Oh yeah, today, David saw Doug at the dr's office. He was so happy! He was in the middle of his transfusion and had just woken up from taking a nap. As soon as he opened his eyes, he asked me where Doug was and right at that moment Doug was walking in the room. He brought David a big lollipop and a little bear. Which by the way, when we got home, he kept asking for it coz he said it was really special. He hugged it and kissed it and told the bear I love you! Thank you, Doug for making David feel better today!

Gotta go, time to take his temperature.
I will write more later...

Wednesday, June 22, 2005 7:43 PM CDT

I am once again, sitting here infront of the computer killing time(David is sitting in my lap). He is once again, running a fever. But it is the weirdest fever, it is not going any higher than 100.7.

Today, we went to the dr's office and it was really special to him because Daddy was there too! David's platelets today were 18, so he received a platelet transfusion (of course, they are Dad's platelets)Thanks Dad!

We will be back tomorrow first thing in the morning so he can get a blood transfusion. His hemoglobin level today is 6.7. Dr. Hajjar said that since his ANC is 0, there is a 75 percent chance that he will end up in the hospital tonight if he runs a fever again.

Alexa and I visited Abbigail today at the Bone Marrow Unit. She is looking really good and she talked...a lot! I am so proud of you Abbigail!

Dr. Hajjar got an email back from the Dr. in NY that he has received David's file and scans. I have to contact them and make an appointment to go up there. We don't know yet if he wants to do the consultation first or go ahead and schedule the surgery. They will be doing the bone marrow test there also. I don't really know how I am feeling right now...I should be happy because we are finally another step closer to the end...but I am very scared. Scared of what? I don't know...I have some research to do. I will write more later...

Wednesday, June 22, 2005 0:34 AM
I am just sitting here infront of the computer killing time. I don't think I will be sleeping much tonight. David is severely neutropenic today and is running a low grade fever (99 degrees), I have to constantly monitor his temperature. His bag is already packed just incase I have to take him in to the emergency room(if his temperature hits 101 it means time to go). I really hope that it stays low coz the emergency room is really my other nightmare. First of all, they make you wait for hours just to get triadged and then they make you wait again for hours to get his IV started. It does not ever fail. The last time he was there, wasn't as bad coz David had a great nurse. She is actually the older sister of one of his regular nurse that takes care of him in the Oncology department at the hospital, but the waiting period still sucked!

He is supposed to go to the doctor's office tomorrow first thing in the morning to get both platelets and red blood cells transfusions. My fingers and toes are crossed hoping that there would be no trip to the ER tonite.

By the way, today was a much better day for him. But he is still very emotional. He told me all day today "You are mine, Mommy!"

Him and Alexa got along very well today. Alexa took care of him, she even cuddled with him while I mopped the floors. David didn't seem to mind that I wasn't next him. I think Alexa noticed how stressed out I was not being able to clean up, so she voluntarily cleaned the playroom without me asking her. And when her little friend Carson came over to play with her today, she told her that after they are done playing, they have to make sure to put everything back then that way, I don't have to do it. Isn't she thoughtful? She even organized David's games by the game consoles. She did a very good job!

I am the luckiest Mother on earth to have these two wonderful children. I may not live the life I was dreaming of, but I wouldn't trade this one in a lifetime.

Tuesday, June 21, 2005 0:50 AM CDT

I was so dizzy but I had to force myself to wake up this morning. It seems as if I'd just fallen asleep and it was already time to wake up. I had to take David for his check up today at the dr's office. Thank God he didn't need a platelet transfusion because Jerry was so busy this weekend, he didn't have the chance to donate. He donated today first thing in the morning so it will be ready by Wednesday...it's perfect timing.

About the pain thing...he is a little better today : ) He didn't complain much about his cheeks. But the only thing is that it seems as if his craving is worst. At around 6:00 pm, he was ready for dinner and he wanted steak. But I was marinating porkchops. I was hoping he wouldn't know the difference since it's teriyaki flavored. I served him his "steak", then 2 minutes later, he's screaming he wants rice. Thank God, I was making rice pilaf, so I served him his rice, 2 minutes later, he was screaming for french toast sticks but I didn't have any, so it was a big drama for about 15 minutes. He even told me, " I got an idea, Mom. How about, I watch t.v., you go to the store." I said he was crazy if he thinks I am going to leave him in the house by himself. And then he said " OK, just bagel then." I couldn't help myself but laugh. This is exactly how I was when I was pregnant, so I have no right to argue with him. This is my punishment for being such a pain in Jerry's bootie when I was pregnant. (he still says I'm a pain in the butt)

Leaving the parking lot at the doctor's office, I had a little accident with the pole by the guard. (for those of you who goes to the same clinic as I am, you know what I'm talking about, you know, the yellow pole?)Let's just say that I am going to hear about this from Jerry for a very long time. He still reminds of the time when I backed into a trailer parked at 7-eleven ten years ago, everytime I tell him that he doesn't know how to drive. Everyone were fine, but the damage that I did to my car is going to cost money. I'm still thinking whether it's better if we just fix it without claiming it with our insurance company, that way, my insurance won't go up or should I pay my deductible and let my insurance go up. I have some phone calls to make tomorrow. By the way, I'm not the only idiot who ran into that pole today. The guard said that I was the 5th person that day and it was only 1:00 pm.
All I kept thinking was I'm soooo going to get yelled at.

David and Alexa were in the living room watching cartoons and I thought I'd take the opportunity to make Jerry homemade bread from scratch with his dinner. 10 minutes later, David realized that I wasn't sitting next to him so he cried and said to me..."Mama, I love you. Am I your best friend?" I replied "yes". Then he said to me "Ok, then come to Mama." It was so funny! Alexa looked at me and bursted out laughing. She has a bad habit of correcting David. She told him "David you are not Mama, Only Mommy can say, come to mama, coz she's mama. You're David, silly!" This is one of those days where eventhough we are going through such a hard time, especially David, I still thank God for this life that He has given me. Yeah, it's a rough one but it could be worst. I am the luckiest person on earth to have such wonderful children, a great husband, and such caring and loving family and friends.

Can you all believe that David is asleep right now? Jerry and I even got to watch National Treasure without any distractions. Tylenol with Codeine really helped him.
Thank you all for your emails and phone calls, it means a great deal to me.
I better go to bed before he wakes up again. I will write more later...

(for me to remember)
Plt 49
HGB 8.9
WBC 0.6
ANC 474

Sunday, June 19, 2005 11:32 AM CDT

DAD, I LOVE YOU

Walk a little slower, Daddy,

Said a little child so small.

I'm following in your footsteps

And I don't want to fall.

Sometimes your steps are very fast,

Sometimes they are hard to see;

So, walk a little slower, Daddy,

For you are leading me.

Someday when I'm all grown up,

You're what I want to be;

Then I will have a little child

Who'll want to follow me.

And I would want to lead just right,

And know that I was true;

So walk a little slower, Daddy,

For I must follow you.

Did I ever say thanks

for all the toys you mended,

games we played,

outings to the park,

and the way you

always tried to cheer

me when I was down?

Did I ever say thanks for

the sacrifices you made

so I could be involved

in so many enriching

activities?

Did I ever say thanks for

working so hard

to provide for our family?

Did I ever say thanks

for having such faith in me

and always being there

when I needed you?

Most of all,

Did I ever say thanks for caring?

DAD, I LOVE YOU

]

You are looking at some incredible parents here...

Well, I only have less than 10 minutes before David starts crying again but I
wanted to wish all the fathers reading his website to have a  "happy
father's day", and let everyone know how David is doing today.  David is
still not feeling very well.  Not only does he feels sick, he really looks
sick.  He complains about his neck, back, cheeks and arms (skin).  He
is in so much pain that I have to constantly adjust him in a different
position, and every time I change his position, he screams out in pain and I
know it's not just an act coz his eyes are filled with tears.  I called the
doctor yesterday and he said he was going to call in Tylenol with codeine if the
regular Tyleno doesn't work.  So far the  non-narcotic drug is working
just fine.  I try to avoid giving him narcotics as much as possible. It's
not good for him. (hahaha)

On the good side, he is still eating very well.  I hope that the Mcdonalds
craving would change already to spaghettios or oodles n' noodles (is that what
you call it Cindy?) It's not fun to go to Mcdonalds 2x a day you know!

 My mom and brother are here to help me with David .  Jerry had to
work @ a car show today, but it's ok, he won't be home too late.  He also
has to give platelets today coz David will probably need it by Tuesday. 
Alright, gotta go, I will write more later....

 

to all the wonderful Daddies out there!

What Makes a Dad?

God took the strength of a mountain,

The majesty of a tree,

The warmth of a summer sun,

The calm of a quiet sea,

The generous soul of nature,

The comforting arm of night,

The wisdom of the ages,

The power of the eagles in flight,

The joy of a morning in spring,

The faith of a mustard seed,

The patience of eternity,

The depth of a family need,

Then God combined these qualities,

And there was nothing more to add,

He knew his masterpiece was complete,

And He called it – Dad.

Author unknown

 

Happy Father's Day jokes

Poor Preacher

After the church service a little
boy told the pastor, "When I grow up, I'm going to give you some money."

"Well, thank you," the pastor
replied, "but why?"

"Because my daddy says you're one
of the poorest preachers we've ever had."

(Cindy, does this sound like someone you know?)

 

Thunderstorm Company

One summer evening during a
violent thunderstorm a mother was tucking her small boy into bed. She was about
to turn off the light when he asked with a tremor in his voice,

"Mommy, will you sleep with me
tonight?"

The mother smiled and gave him a
reassuring hug.

"I can't dear," she said. "I have
to sleep in Daddy's room."

A long silence was broken at last
by his shaking little voice:

"The big sissy."

 

One evening a little girl and her
parents were sitting around the table eating supper. The little girl said,
"Daddy, you're the boss, aren't you?" Her Daddy smiled, pleased, and said yes.
The little girl continued "That's because Mummy put you in charge, right?"

(someone emailed me these just thought I'd share...)

 

Friday, June 17, 2005 11:21 PM CDT

It has been a rough day. This pounding headache would not go away. I can feel myself starting to fall apart. But I have to remind myself that I have to be strong for David. It's so hard to watch him be in so much pain and not be able to do anything about it.

I haven't slept because he has been so uncomfortable all night and all day today. His skin has been so sensitive. The only thing he wants on him is this really old sheet with holes on it. It is very soft. Last night he kept waking up every 10 minutes screaming that he wants his soft blankie on him as socks. I wasn't doing it right so he kept screaming at me. Finally I just wrapped his whole body in it like a cocoon and he actually feel asleep, for a little bit. Then 30 minutes later, he was screaming at me again. I have to find some pajamas that are made of silk for him, maybe that would help, but they don't make any satiny or silk pajamas for boys. My Mom knows how to saw but her sewing machine is broken. I am actually thinking of going to a seamstress tomorrow and getting some custom made.

Today, I wasn't allowed to go anywhere...I laid down with him all day. Every time I moved, he would open his eyes and put his hand on my face to make sure I wasn't going anywhere. My right butt cheek and right arm was numb from not moving for hours.

Oh yeah and by the way, David is eating and drinking great today. Remember when he was craving watermelons yesterday? As soon as we got home, he never even mentioned it again. Today, he ate about 5 bowls of cookie crisp and he has drank about 1/3 of the gallon of the strawberry lemonade hawaiian punch. When he woke up from his nap, the first words out of his mouth were "I want chicken nuggets and cheeseburger and french fries and cookie flurry from Mcdonalds" I said "ok" and he screamed "NOW!" My Mom was here today so she can keep Alexa busy while I cuddled with David all day (Thank God!)So I thought I was just going really quick by myself and go through the drive thru, but he said he wanted Alexa and him and grandma to go and smell Mcdonalds, "NOW!", meaning I have to go as is with no bra on and my bed head. OKIE-DOKIE! As long as he eats what he wanted I have no argument with him.

I just had to pause there for a little bit so I can flush his central line with heparin lock. His Neupogen just finished and while I was flushing it with dextrose, I felt a really heavy feeling in my heart. It was like as if my heart was broken. Tears were streaming down my face while I was flushing his line. In my head I was telling David that I was sorry he didn't feel good and that I can't fix his boo-boo, eventhough I know that it wasn't my fault or anyone else's. And that I was sorry that my magic kisses maker was broken coz it wasn't making his boo-boo go away.
I guess lack of sleep will make you emotional as heck! I am normally not this way. And it's amazing how much patience I have today. I didn't even scream at anyone today. HA! I guess that's a plus.

I am also starting to realize that I am becoming a better person today. I am actually thinking about how others would feel if I said something or wore something that wasn't appropriate. Before, I never never really considered what others would think of me and how I acted, especially with what I wore. All that it mattered to me was how I felt. I think my sister Gail and my mother-in-law were my biggest victims. So, if you both are reading this, I want you to know that I didn't mean for my words and actions to be so harsh. So I am sorry (Gosh, if Jerry was reading this too, I think he will have a heart attack! That word never, comes out of my mouth, unless I really mean it...so you all know that i really mean it, eventhough it didn't come out straight from my mouth, it's coming directly from my heart.)

Being considerate came up because yesterday, for the very first time in my whole married life, I actually listened to Jerry. I DIDN'T WEAR THE SHIRT I WANTED TO WEAR, BECAUSE JERRY TOLD ME NOT TO. I was getting ready to go to the support group meeting and I only had a little bit of time to get ready (blame it on the thunderstorm)so I just picked up the 1 and only shirt that was ironed and ready for me to wear. You see, for months now, I have stayed away from this shirt. I was actually scared of this shirt. But I told myself, today, I am going to face my fear coz there's no time to iron. I bought this shirt from my favorite gothic store at the mall way before christmas last year because David said that the girl in the picture was me. It was Japanimation. Without reading what the shirt said, I bought it. When I came home to try it on, the shirt said...There's no escaping from me, and the bottom of it said "DEATH". I made a joke about the shirt saying that's true that's me... my sister even accused me one time of worshipping the devil since I am into goth back then.

Since I had children, I have calmed down, thank you! I still like the weird stuff but never in my life would I even think about worshipping the devil! God is a big part of my life now, without Him, I wouldn't know what to do. It's great to know that He is always there for me when I need him. And I believe that with prayers, anything is possible...there's tons of people praying for David so I know, he is going to be just fine....

p.s.
would my shirt offend anyone if I wore it? Please let me know...

THURSDAY,June 16, 2005

Good morning everyone! It is not a very good morning for David, he woke up with a headache and he is complaining about his legs hurting and his back. He is also saying that his cheeks are hurting. He is still not eating anything coz his tummy is hurting also. He is very emotional especially when he sees a commercial for Disney. He said that he misses Mickey Mouse. We have also been watching Alice in Wonderland since we got here and I think we have watched it close to 20 times. I almost have the whole movie memorized. He is laying on my lap right now, complaining about sores in his mouth, I have to call Ted to check him out. I will write more later.....


(for me to remember)
Hgb 8.4
Plt 98
WBC 1.7
ANC 1530
p.s.
he is craving for watermelons...where am I going to get that in the hospital?

WEDNESDAY,June15, 2005
Cycle 6 day 3 (Doxorubicin)
David finally ate something today. He had a bowl of cereal in the morning and some potato chips at 11 at night.
He is still not feeling well. Yesterday, he received a dose of Cefepine (antibiotic)At least he hasn't had a fever all day. Maybe we will go home tomorrow....

TUESDAY,June 14,2005
Hello everyone!
David is still in the hospital. It is cycle 6 day 2 of his chemo(Cyclophosphamide w/ Mesna & Doxorubicin). He is not feeling very well today. He pretty much just slept all day and is not talking except for when he tells me he has to pee and to hold him like a baby on a tree top.

He had to have an ECHO test for his heart before they started the chemo but yesterday he was very nervous and scared so he didn't get to do it.
Today he promised he would cooperate but they gave him sedation anyways just in case he starts to freak out again.

Of course the sedation didn't work. But I was so proud of him because he was very cooperative, only a little bit nervous. He was very loopy for about 3 hours from the sedation.

Also, little Anna was still here coz of her eye infection. David didn't really get to play with her because he wasn't feeling very well all day today from the chemo he received last night.
He also had diarrhea and right now he is running a fever. From what? No one has a clue. His nurse Jill is going to draw some blood cultures. He is complaining that his tummy is hurting. And he has lots of red dots on his face from vomiting today. These dots are the tiny veins on his face that leaked out, they are called petichaie.

His other friend Carlos(he has leukemia) came for a little bit and played with him and that made him get up and smile.

Yesterday, grandma Diane brought him a remote control fart machine and the kids just thought it was the funniest thing in the world. Alexa and Anna would hide it behind the trash can and when someone would come in the room they would hit the remote control and it sounded like someone was actually farting...really loud! Nurse Alice came out of the room telling Pam (tech) that she thought someone has gas problem in that room! These kids are so silly! At least somehow the hospital can be a fun place instead of of a scary place for them. There are times when David would actually ask me if it's time to go back to the hospital!

Thank you all for checking up on David and for all your thoughts and prayers. Hopefully he would go through this round of chemo with no problems. I will write more later.....


MONDAY, June 13, 2005 2:49 PM CDT
Cycle 6 Day 1 of chemo (Vincristine & Doxorubicin). Since David is not really on a protocol, he will be receiving Vincristine only for one day instead of the usual 3 days, so the dosage will be three times as much.

SUNDAY, June 12, 2005

Hi everyone!  I had a great weekend...we went to the
beach, it's been a while since I went there. 

Friday, June 10, 2005 12:13 AM CDT

Nothing much happening today...
David is feeling great and eating non-stop. His eyelashes are falling out again! Since they are still very short, they are getting in eyes and it's irritating him. Remember that one eyelash that never fell off? It's still there! He is very proud of that eyelash, you know!

I took him to Gamestop to get some new games for his X-Box, while Alexa was in school taking a gifted test.
She passed it! I'm sooooooo proud of her. When I picked her up and told her how proud I was of her, she asked me if that's the reason why I won't stop smiling. I told her that's one of the reasons, but the real reason is that today our life is almost like how it was. No trips to the doctors office or ER, no picking up a prescription at the pharmacy, I don't even have to worry so much about germs today! But I still have to clean the house today.

Thanks for checking up on David! I will write more later...

Thursday, June 9, 2005 4:51 PM CDT

Hello everyone!
I am smiling from ear to ear. Everything were good news today! His tumor has shrunk from the MRI and the bone scan came out negative again! I will be including the transcription report from the very beginning and the last one later on. I just thought I'd share the good news.

David was supposed to be admitted tomorrow for his 6th round of chemo, but his ANC went back down to 800. Normally, Dr. Hajjar would give chemo with the minimum of 750 but since he went down instead of up, he will be receiving 2 more doses of Neupogen just to give his white blood cells a little push. He will be back to the Dr's office on Monday to see if he is ready. Dr. Hajjar has already contacted the Dr. in New York, and just now waiting for his response. David will also be having his bone marrow test sometime next week.

So far everything has been going according to plan. I hope that I don't get disappointed with the result of the bone marrow test. I am still feeling that everything will be just fine....I hope!

Thanks for all of your prayers, it is definately working!

love,
Sarah

(for me to remember)
WBC 1.5
ANC 800
PLT 201
HGB 8.8

p.s.
We saw little Anna today, and her eyes were so swollen, it looked so painful... She has an eye infection from the chemo she received. Please include her in your prayers.

http://www2.caringbridge.org/fl/annabadman

Wednesday, June 8, 2005 10:29 AM CDT

Yesterday went well...except that he was so hungry that he was hallucinating about a giant chocolate cake all day.

David didn't get his bone marrow tested because of a schedule conflict. Dr. Hajjar will have to do it some other day, and I made sure to tell him that he has to be put under when he does it. Abbigail's dad told me that when she had her bone marrow biopsy done, she was concious and she was crying the whole entire time. I can't even imagine how Tim felt, watching her suffer like that.

No matter how many times David has been put under, I will never get used to it. To watch him so helpless and innocent. I didn't want to leave him. I know this test wasn't going to hurt him, but he was scared and I needed to hold his hand. Saying goodbye is the hardest. Thank God that Alexa was with me, she kept me busy and the time went by so quickly.

The food of the week is chocolate cake. After he was awake at the recovery room, he ate a slice of chocolate cake from the cafeteria and it seemed as if he inhaled the whole bag of potato chips. He was so hungry, he didn't want to share with Alexa not even one potato chip. And he was so thirsty that the bottled water tasted so good to him. On the way out of the hospital, he wanted to stop by the cafeteria again so I could buy him 2 more slices of cake. He couldn't wait to get home to eat it!

He is right now as happy as can be and wants a slice of chocolate cake every 5 minutes. He is going to get so fat and I am so happy!!! The only hard part for him is going to pee because it burns so bad. They had to put a catheter in him yesterday.

And on the way home yesterday, at 5:30 pm I had to pull over the side of the road on I-4 coz he said he was going to pee in his pants. It was the scarriest thing in the world pulling over on the busiest time of the day. Thank God, I always keep a urinal for him in the car just in case of situations like this.

Thank you all for checking up on him and our whole family. The phone calls and messages means so much. He loves listening to the answering machine especially when someone says his name. Today is going to be a lazy day. It looks like its going to rain again. Tomorrow he will go back to the Dr's office for a recheck. I will write more later...

ps
we had the best nurse yesterday, her name is Jennifer. She said she is going to be a grandma but she looks like she was in her thirties. I wish I would look like that when I become a grandma. Lucky her!

Monday, June , 2005 11:51 PM CDT

Today David went to the Dr's office for a visit. Everything is fine except for the one thing I mentioned to the Dr. about lately I've noticed that he has been limping again...he said that he thinks it is PHERIPHERAL NEUROPATHY--- (A disorder of the peripheral nerves, usually involving the feet, hands and sometimes the legs, arms and face. Symptoms may include numbness, tingling or burning sensations, pain, abnormal reflexes, weakness and partial paralysis.) He thinks it is from the anticancer drug Vincristine. But he also said, that the tumor could've spread to his spine.(which I hope not...coz that would not a very good thing.)

I can't sleep...all I could think about is tomorrow. He is getting his CATScans and a full body bone scan(under general anesthesia), if Dr. Hajjar's schedule permits it...David will also go through a bone marrow test. I am so anxious about the results already!!! Please pray that everything is going according to plan, that his tumor is shrinking and that there is no more cancer in his bones or his bone marrow.

He will also be going back on Thursday for a recheck and either on Friday or Monday, he will get his
6th round of chemo while we are waiting for a date with the surgeon in Sloan-Kettering in New York. After his surgery is the stem-cell transplant, the hardest and scarriest part of his treatment. Then Radiation, Accutane therapy and then Immunotherapy(Again in New York).
(this is supposed to be his last round of chemo, but since I've decided that he will have is surgery in New York, the Dr. had to make some adjustments)

David is doing so great and I am so proud of how brave he has been! He has taught me so many lessons in life and one of them is to not ever take anything for granted. Everyday that we have with each other is such a special gift from God...and I cherish every moment. I've never imagined my life to be this chaotic ever! But I always look forward to tomorrow and spending it once again listening to my children's laughter and watching their beautiful faces smile at me. Today, BLESSED is the word I picked.

Saturday, June 4, 2005 10:04 PM CDT

Friday---
Hey everyone!
David, Alexa and I went to visit Doug and his family. They ordered pizza and we ate luch with them. The kids had such a great time, especially David! There were three boys in their house(actually there's four but the oldest one wasn't home). I thought that as soon as we came in, all that he was going to do was play with the playstation and instead he got to really play with the boys. They gave him one of their light sabors and he just loved it! He really had a great time with them.

It was a very different scene for Alexa. Because for the very first time, we are visiting a house full of boys. Normally we visit her friends and most of the time, it is mostly girls. David cried when I told him it was time to leave. He didn't want to leave all the fun behind!

Friday, June 3, 2005 0:55 AM CDT

David had a great day today, eventhough he spiked up a fever again (100.4). Once again, I called Angela and told her, and she said if he got up to 100.6 I need to bring him in. Luckily, it never got that high, but it was off and on all day and night. But he never once acted like he wasn't feeling well. Him and Alexa played the whole entire day and only fought twice. Alexa is the best big sister in the whole wide world, she kept checking his temparature, and making sure that he was drinking his gatorade.

Can you all believe that I actually let David in the pool today? No, he didn't completely submerge himself...(Dr. Hajjar would kill me for that!)just to the 2nd step and he had so much fun splashing. Of course, the whole entire time he was in the water I kept picturing him falling in and that would definately not be good.

I felt sad watching him laugh and kick his feet in the water because I know that he must really miss swimming, considering he almost lived in the pool since he was a little baby and all of a sudden, he wasn't allowed at all. I remember when he thought that it was always funny when I would tell him that it's time to get out and he would kept swimming away from me until I would have to get in the water and try to drag him out. Since after he was diagnosed with cancer, he hasn't asked me not even once to go swimming or take a bath in the tub. He's very understanding about his situation. And I am so proud of him for that.

Jacques (our poodle) is so over protective about Alexa and David when they are next to the pool. It was so funny, Alexa kept trying to do cannonballs and Jacques kept blocking her from falling in the water. And when she finally got the chance to do one, Jacques barked like crazy and kept looking at me and Jerry as if he was telling us to rescue her. He finally stopped barking when she got out of the water.

Oh I almost forgot to mention the food of the week, it's garlic breadsticks and alfredo sauce for dipping. He originally started craving the breadsticks from Olive Garden, but I have these frozen ones and he can't even tell the difference. The only thing though is that no matter how hard I try, I can't make their alfredo sauce the same way they do. I guess, I'll be going to Olive Garden a lot until he finds another food to crave. Anyone have a good Alfredo sauce recipe?

love,
Sarah

Thursday, June 2, 2005 0:02 AM CDT

Hello everyone!
Tuesday, we went to the clinic and David's counts were a little up. But he has a little ear infection (Must be caused by the fluid that doctor Hajjar saw last week in his ear)...Angela said Amoxicillin should make it go away.

Monday, May 30, 2005 11:43 PM CDT

Hi!

Thursday, May 26, 2005 11:17 PM CDT

Tuesday, May 24, 2005 4:11 PM CDT

Hello everyone!
I am still at the hospital. Today was a great day. I had a blood transfusion at 4:30 am and I felt so much better (Thank you Michelle!). I still don't want to eat or drink anything because my mouth hurts and my tummy hurts. Mr. Ron (nurse) gave me some benadryl just in case I have an allergic reaction to the blood, but instead it made me really sleepy.

When I opened my eyes and Doug's smiling face was there I didn't feel sleepy anymore. I was so happy to see him. We took some pictures and I got to throw some balls at Mr. Nick. I even ate a little bit of cookie crisp! They brought me some playstation2 games but my Mommy didn't bring my playstation to the hospital...Oh well, I'd rather throw the balls at Mr. Nicks head anyways!
They stayed for a while, and I loved every moment of it. Doug is a really good photographer, he took some really good pictures of me! I'm sure my Mommy will show them to you guys later.

Ms. Terri from Basecamp also brought us lunch from McDonalds, she is such a nice lady. She knows exactly what I want, chicken nuggets from Chick-fil-a and french fries from Mcdonalds. Today she brought me a special treat...an Oreo Mcflurry.... Yummmy!!!
P.S. I like her long hair.

My Mommy will write more later...

love,
David


Monday, May 23,2005

Today I woke up at 6:00 am throwing up....I threw up like 5 times. Yuck! And I didn't feel good the rest of the day. She gave me some Benadryl and eventhough I felt so weak I told her thank you...I never forget to have good manners, no matter how sick I am.

Then at 1:30 pm, my Mommy took me to see Dr. Hajjar but I only saw Angela. Everytime I ask her where we are going she always says "Going to see Dr. Hajjar today" even when it's Angela we are going to see. What's going on here? Grownups...I will never understand them.

And you know what? My friend Doug and his brother Robbie came to the clinic and I was sooooooo happy!
Robbie had the Star Wars game for the playstation2 (I've always wanted that game!) and he was so nice to let me borrow it, but they had to leave earlier than us :( I was getting some IV fluids because I got a little dehydrated from throwing up, so my Mommy and I had to stay a little longer plus I had a little temperature (99.5) and they wanted to see if it will go down a little, and it did.(Yeyyy!!!)

Doug is coming back tomorrow so he can get a platelet transfusion, and I have to come back tomorrow too to get a blood transfusion...Perfect! And he said he will bring the game again so I can play with it....See? I told you he was nice!

At 6:30 pm
I spiked up a fever (101.1) so my Mommy had to take me to the emergency room and they had to admit me so now, I am here at the hospital and Dr. Hajjar said that I will be here until my counts go up. (ANC-0) I hope I can get out of here before Sunday, my Uncle Dave is coming to visit me all the way from Connecticut. I can't wait to see him and Aunt Linda!

love,
David

Monday, May 23, 2005 0:06 AM CDT

Hello everyone!

Sorry I haven't updated in a few days.  I had so much disinfecting to do
because I wasn't home for 5 days!  Cancer is sooo unfair, the time I should
be spending with David, I have to spend it killing germs instead!

David came home Friday afternoon, and was soooo tired because his hospital
admission was more like a party rather than the normal boring hospital stay he's
been doing since January (Thanks to Danny and Carlos!)

His friend Danny was admitted on Wednesday for chemo (This was his last session.
Yeah! Go Danny!) and from that day on, David was never bored...either Danny is
in David's room or David is in Danny's room. (David was mostly at Danny's room
because Carlos was also there. He is such a nice boy...He was very careful and
responsible with the two little ones, he even knew how to reset his own machine
whenever it started beeping! (Carlos had leukemia and he just relapsed)



On Thursday night, we celebrated Danny's last day of chemo and the boys were up
partying until midnight! They had sooo much fun!

David getting chemo.

French Fries taste the best when shared with a friend!

I love my Mommy!!!

That's nurse Ron...he seems to be the only nurse he listens to.  He's
a very nice guy.

David kept saying "that guy Ron, he saved my life..." because as soon as he
came to take care of  David,
he got to go home the next day!

                                                                   
Go Danny!!!

              
Danny---chickenhawk!

         Carlos---chickenhawk!

               
The Three Masketeers!

See...who knew anyone could have this much fun with the puke bukets!

This was from yesterday, (Happy 2nd birthday Ciera!)

Saturday May 21st, 2005

 I was debating  if I should bring him or not to Ciera's party( it
was a swimming party) It would be such a tease for him because he is not allowed
to go in the water .But I felt so bad knowing that all his friends were having
fun while he sat at home.  So we went to the b-day party and David did
really good.

Vanessa played ball with him and then he went inside and played with the
playstation.  He had a lot of fun just by spending time with his friends. 
Especially with Cyrus and Alex.  He didn't seem to mind that he wasn't
allowed to go swimming. All the kids somehow managed to include David in the
water play.  He squirted water at the ones swimming in the pool then he
threw all the floaties at them, then, they would throw it back at him.  The
sound of his laugh is music to my ears, and medicine for my heart...I wished
that everyday was like this.

Tomorrow (Monday) is David's Dr. appointment, it was originally for Wednesday
but I was afraid his platelets and hemoglobin level would be too low then. 
I don't want to wait, just in case.

 

David

Thursday, May 19, 2005 9:03 AM CDT

Still at the hospital, getting chemo....
The chemo is now kicking in...he doesn't want to eat or drink and all he wants to do is stay in bed...
Last night Jerry came to the hospital and when he left David didn't feel good and he said to me, "Daddy took my powers". I couldn't help myself from laughing. Silly boy...

WEDNESDAY, May 18th
The cravings has started...This week it is bagels with cream cheese. Good thing I brought a toaster, it really came in handy!

Towards the evening he was craving ice cream and some chips, not just any chips, it has to be Ruffles sour cream and cheddar, so we went down to the cafeteria. He ate almost the whole bag of chips!

Afterwards I got him to finally walk to the game room and he played with the games but he kept having to pee every 10 minutes so finally after the third time that he had to pee again, Frank (nurse) said we had to go back to get his chemo started.

Danny came to the hospital today, he is getting chemo also. Like always, he greeted David with the biggest smile on his face. And like always, David doesn't say anything to him...Danny does all the talking and David just listens...
He also brought David a little blue pirate pillow. David just loves it! (Thank you Danny!) He wrestled with it as soon as we came back to his room!

David will be at the hospital until Friday night, maybe Saturday morning...Hopefully his recovery is quicker this time, since they had to cut his cisplatin in half. (that's the drug that caused a little bit of his hearing loss)Please also pray that he doesn't loose anymore hearing.

Thank you all for visiting David's website, it means so much that you all care enough to take a few minutes out of your hectic lives to check up on him.

Monday, May 16, 2005 3:01 PM CDT

Hi everyone! I am at the hospital (Finally!)getting chemo today.
After we went to Dr. Hajjar's office today, I got to go to Mcdonalds for lunch and played in the gameroom.
I beat my Daddy in airhockey 6 times!!!
Ok...I'm kinda tired from yesterday, I think I am going to take a little nap.
Goodnite!
love,
David

Monday, May 16, 2005 0:42 AM CDT

Today I went to a lake with my family, I rode in Mr. Pat's boat but I wasn't allowed to ride in the jetski or swim. I just don't understand....I already told my Mommy that I wasn't scared of the sharks anymore but she still told me No!
Oh well! I had fun though! Maybe next time!
Do you know what? There was a little beach at the lake and I got to make sandcastles and put my feet in the sand...the warm sand felt so good in between my little toes. And you wanna know what else? There was a park and I got to run around like a crazy monkey! I was everywhere, running around that my Mommy got so tired of chasing me everywhere!
My best friend Cyrus was there and he showed me the coolest trick with his tummy...he can make his tummy wavy! I tried it but I can't do it...Maybe next time!
I also ate lots of chips and a couple of hot dogs and June (I think that's how you spell her name?) made the bestest, scrumptulicious (Alexa made that word up) chocolate cookies on earth!
But the best part of the day is that I got spend time with my friends and be sort of normal again!(I just wasn't allowed to swim in the caca water)

Yo-Yo-Yo Whaz up? --

Thursday, May 12, 2005 9:56 PM CDT

Alexa came home today with a fever and a sore throat, I knew in my heart it was strep throat but just to be sure I took her to the dr's office. I had no choice but to take David with us and luckily they didn't make us wait.

David had so much fun! I left him in the back office with Beth and Zaida while Dr. Silva looked at Alexa. Beth used to watch him when he was a baby at Parkway Baptist Church while I volunteered at Alexa's Awana class. David just loves her. She pushed him around in the stroller, and colored with him and gave him lots of stickers. He always gets lots of love from her everytime we come to the dr's office(which was at least once a month before he was diagnosed with cancer.)
and Zaida is my friend Melissa's Mom, I have known her since I was 15 years old... and both my kids love her too because she is so silly. My kids call her grandma.

Terri Jackson, the nurse practitioner was there also. She was the one that found David's tumor. I haven't seen her or spoken to her since David started his therapy and I made sure to say hi to her and tell her thank you again because she saved David's life. If she didn't do her job so well, she wouldn't have found the mass in his abdomen and I think it would have been too late if it was found later on.

After the doctor's visit we went to Publix to get Alexa's prescription filled and David wanted to go shopping for fried chicken and junk food and of course a hotwheels car.

I have continue later on, David wants me to play pretend food with him....he said he has a surprise for me, it's spaghetti and meatballs! Yummm.

Wednesday, May 11, 2005 6:56 PM CDT

Today was a great day for David but a bad one for me.
(Make sure you have a few minutes before you start to read this entry, otherwise stop now and come back later because I think it's going to be extra long...)
We went to the doctor's office this morning and his counts have not yet recovered enough to start his chemo. His ANC is 660 and they want him to be at least minimum 750 so we will go back on Monday to recheck his counts, everything else is fine.
I was staring at David's sweet little face through the rear view mirror and I felt so nauseous, I had to roll my windows down to get a breath of fresh air. I thought I was going to throw up and that wouldn't have been a good time because I was on I-4. I was stressing out because I know that deep down inside, the chemo does make his cancer go away but at the same time it is poison that they are pumping into his veins and I have no control over it.
He gave me a smile and told me he loved me so so much so I ended up crying instead.
At the doctor's office his friend Danny was there. If I was to give an award to a kid for most Congeniality I will definately give it to Danny. Everything that he says makes me laugh and he treats David as if they have been friends forever.
Another friend was also at the doctor's office---Ms. Anna Banana (that's David's girl) she was getting chemo today. And as soon as he saw her, he wanted to get out of the dr's office and get some chicken wings...and the same thing with Anna, I wonder if they see a plate of chicken wings instead of each other's head? It's like as if they get so hungry everytime they see each other.
I promised David I was going to take him to visit Abbigail
today at the hospital. We took Anna and her Mommy Holly along with us so Abbigail and her Mommy Hollie can meet them. On the way to the tenth floor, we had to stop at the vending machine to get both kids some doughnuts...(I told you they get hungry around each other) But the doughnuts were too sweet so David didn't finish his.
Abbigail was so happy to see David but David threw a fit screaming for chicken wings so we only got to spend a few minutes with Abbigail.
On the way out of the hospital he started crying and he kept saying "Abbigail....Abbigail....I want some chicken wings...I want to see Abbigail...." His hormones are worst than a pregnant woman. I was trying to rush out of the hospital so I can satisfy his cravings for chicken wings and now he is crying because he wants to see Abbigail, after he just threw a fit in her room. Men! If I was like this when I was pregnant, I just want to let my husband Jerry know-THANK YOU so much for putting up with me!
A couple of nights ago, I had to change his dressing and he gave me such a hard time, it was like as if he went psycho, kicking and screaming and telling me he hates me and I couldn't understand why he was acting like that. He said it was hurting him alot, and I noticed that the tubing has come out a little bit and the stitching is starting to come off. So today, I mentioned this to Angela (nurse practitioner) and she said they had to take a culture of his site coz it looked kinda moist and they had to change his dressing afterwards. The detachol irritates his skin and they didn't have any Alkare so I had to help Ms. Maggi and Ms. Diane with taking off his bandage without any adhesive remover. The two nurses held him down while I took the bandage off carefully, but he was kicking and wailing and telling them they hate them all doctors... and finally they had to scream for Angela to come and help, then Dr. Hajjar also had to come and try to calm him down. Everyone was so exhausted, I think they got their whole days worth of work out just by changing David's dressing. I had to say something to David to make him feel better and "That wasn't so bad now was it?" were the words that came out of my mouth and I didn't think the nurses found that very funny.
Luckily, after the horrible culture and dressing change, Alex was there to cheer him up (like always, he was also there the day after David had his biopsy and he was the one to motivate David to get up and walk around so he won't hurt as bad.) He came to the clinic today with his Mom and Dad to say hi to David, he had to get some testing done because he has a significant amount of blood in his urine and they don't know why. Please add him to your prayer list that everything will be just fine , and this is nothing serious.
David also asked if he could see his bestfriend Cyrus on the way home, and I couldn't say no...so we did. He was the biggest brat, he threw temper tantrums, he wouldn't share the playstation with Cyrus, and he kept telling Ciera to go away because she was a baby girl and he only likes baby boys. He also punched Cyrus in the face and Cyrus only four years old, was so patient with him. He didn't yell at David or hit him back. Normally he bullies David around but today it was the other way around and I couldn't believe how good Cyrus was with him. He even told David "I love you David" just out of the blue and my heart skipped a beat, I had to hold my tears back because he said it with such a sincere heart. Cyrus has never told David he loved him, if for anything he told me before that he only loved his Mommy and Daddy. They have known each other for as long as they have lived and they have been best friends since then. David cannot ask for a better friend than Cyrus, I hope they will be friends until they grow old and grey.
I prayed the other night and asked God to give me a refill of patience because I am running out and I need extra, especially with David's attitude issues. He has every right to be angry at me and the world because he still doesn't understand why he has to go through this hell. Please pray for me ----
1)patience and an extra bucket full of it.

2)serenity (so I won't go crazy)

3)David's counts to go up so he can start chemo on Monday

4)and for God to remind me that He is there and he is the one guiding me to make the right decisions.

Thank you all so much for caring and for taking a few minutes out of your time to check up on David. It means so much!

I feel better now.....

(for me to remember)
WBC 1.5
ANC 660
PLT 203
HGB8.4

Tuesday, May 10, 2005 12:17 AM CDT

Yesterday my Mommy took me to get my hearing test done, because tomorrow is chemo time again :(
The audiologist said that I have lost some of my hearing, but only some of my high pitch sounds. She said that when somebody talks to me and says the words she or catch...I don't really hear the sh and ch. But it's not that bad yet...she also said that it takes up to two years for the chemo to do more damage in my hearing. Let's pray not, because I really like to hear Alexa's reading and my Grandma's silly noises and the songs my Mommy sings to me before bedtime.
Today I went outside and I did tricks on the swing, it was so cool especially when my Mommy kept saying "David please don't do that you will fall and bump your head...Oh my gosh!!" Then she acts like she was having a heart attack.
I just laughed at her and told her "what? I'm fine. Just a trick!"

Ok...I gotta go!
It's X-Box time!!!

love,
David Norris

p.s.
I love singing "baby it's cold outside" with my Mommy. I make my Mommy sing it with me about 100 times a day...

p.s.s.
there's new pics from my hearing test :)

Sunday, May 8, 2005 10:52 AM CDT

My friend Stephanie emailed me this and I'd like to share it to all the mothers in the world .....

HAPPY MOTHER'S DAY!!!


This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up barf laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's okay honey, Mommy's here."

Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted.

This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.

For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.

This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.

This is for the mothers whose priceless art collections are hanging on their refrigerator doors.

And for all the mothers who froze their buns on metal bleachers at football or soccer games instead of watching from the warmth of their cars.

And that when their kids asked, "Did you see me, Mom?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.

This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.

This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand)mothers who wanted to, but just couldn't find the words.

This is for all the mothers who go hungry, so their children can eat.

For all the mothers who read "Goodnight, Moon" twice a night for a year. And then read it again. "Just one more time."

This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.

This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.

This is for every mother whose head turns automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home -- or even away at college ~or have their own families.

This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.

This is for mothers whose children have gone astray, who can't find the words to reach them.

For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.

For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.

For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.

This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.

What makes a good Mother anyway? Is it patience? Compassion? Broad hips?

The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?

Or is it in her heart?

Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time?

The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?

The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?

Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?

The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation... And mature mothers learning to let go.

For working mothers and stay-at-home mothers.

Single mothers and married mothers.

Mothers with money, mothers without.

This is for you all. For all of us...

Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray and never stop being a Mom..

"Home is what catches you when you fall - and we all fall."

Friday, May 6, 2005 2:13 PM CDT

Hi everyone!
Nothing much happening today. I took David to Dr. Hajjar's office for a blood recount, and his chemo will be delayed until next Wednesday since his ANC dropped to 458! Good news- he didn't need a blood transfusion today. His hemoglobin level went up a little bit. So we still have Michelle's blood in the bank. It's always nice to know we have it, I know we will need it in the next couple of weeks, maybe sooner.
Driving home was kinda weird. I couldn't believe that I am going to actually be home for 2 weeks in a row... Wow! Believe it or not, I was actually negotiating with Angela to let me come back on Monday after I take him for his audiogram to check and see if we can start chemo on Monday. I know it's only 2 days difference, but you never know...I don't want to give this monster a chance to grow any bigger at all!!!
David is taking a nap right now, poor little guys is so tired. He's been awake since 7:30 this morning. I am kinda tired too, Alexa is picking out a book to read to me....I'll write more later...

(for me to remember)
PLT 137
HGB 8
WBC 1.7
ANC 458

Thursday, May 5, 2005 12:27 AM CDT

Hello everyone!
Today I got to eat lunch with my sister Alexa and her friends at her school. I haven't done that since I was diagnosed with cancer. I had such a great time, I got to be silly and make funny noises at the girls and pretended I was farting and they got all grossed out and I love grossing the girls out coz it's soooooo funny!!!And guess what I had for lunch? Spaghetti and meatballs! Yep! My Mommy said that my muscles are getting so big, almost as big as my Daddy's muscles! And I'm getting so big that Mommy says "I can't pick you up anymore! My arms feels like they're going to fall off! You're so heavy! Must be all the spaghetti and meatballs in your tummy!" She's so silly... and you know what? she told me that soon, I will be bigger than her and then, I would have to carry her...I said ok!
Well, I have to go now, I'm going to play a game called Lord of the Rings (my Greema and my Mommy's favorite book)on my X-Box...you guys should see me play, I'm an expert!


Love,
David Norris

p.s.
my Mommy put new pics...

Tuesday, May 3, 2005 10:03 PM CDT

Today was a great day for David! He went to Dr. Hajjar's office for a platelet transfusion and when we got home, he helped his Daddy wash the car. And they even used the chamois to dry it up reeeaaallllyyyy goood!!! especially the wheels so it would look nice and shiny! (Too bad the rained poured down really hard on our way to Pirates Dinner Adventure) :-( Oh well, they can wash it again, that was good father-son bonding time.
Also, David is now an official pirate. He had such a great time! He has been waiting for us to take him there so he can see real live pirates kick each other's butts. And Alexa and Daddy got to participate in the show. That was really exciting! He was so into the show that he didn't eat his dinner. But it was ok with me because him and Alexa ate about 5 meat raviolis and 6 meatballs each with alfredo sauce for appetizer. Then he ate a slice of apple pie and vanilla icecream for dessert. Yuuuummmmmyyyy!!!!
He is now one happy pirate saying ahoy matey while riding his scooter and watching cartoons in the living room.
My heart is once again smiling.....


p.s.
we will be going back to Dr. Hajjar's office on Friday for a blood count recheck, he might need a blood transfusion then, but for now everything is just peachy : )

p.s.s.
There's new pictures in the gallery...


(for me to remember)
PLT 24
HGB 7.8
WBC 5.3
ANC 3975

Monday, May 2, 2005 12:09 AM CDT

Hi everyone... We just came back from the doctor's office and David is still neutropenic. He has to go back tomorrow for a platelet transfusion, and guess what? I don't have any blood in the bank. Today is his 19th day and I figured by now his little body already recovered especially how he is acting at home. (Just a normal, happy, doesn't sit still 4-year old boy that asks "Why Mom? How come?" every 2 minutes.) If I didn't take him for a blood count today, I wouldn't of known his platelets and his hemoglobin levels have dropped. His white blood counts are up to 1.7 and his ANC is 278, it doesn't look like we're going to the Pirates Dinner Show. Dr. Hajjar said if we feel comfortable enough we can take him, but I don't want to take any chances of him getting sick. Since his counts has not recovered yet, he won't be starting chemo on Wednesday either.
We stopped by Toys R' Us on the way home and bought him a new racing game for his X-Box, and he is right now busy playing, so I figured I'll take advantage of this few minutes to update everyone.
Thank you all for checking up on David....I'll write more later.

(for me to remember)
PLT 20
HGB 8.2
WBC 1.7
ANC 278

Saturday, April 30, 2005 11:40 PM CDT

Hi everyone!
Nothing much happening these couple of days....just hanging out. David has been happy and eating very well. His food of the week is spaghetti with meatballs, he has to have it whenever he craves it. (Thank God for frozen meatballs and prego spaghetti sauce, it comes in very handy especially at 1 am)I tried giving him the chef boyardee spaghetti and meatballs, just to try and see if he would like it (and it's faster) and he told me that that stuff is not "paghetti and meatballs", "it's garbage".
His been playing with Alexa and they giggle and ride their scooters all day long in the living room. He finally calls Alexa "Alexa" instead of "Wexa".
We go back to Dr. Hajjar's office on Monday, hopefully his counts are up then. He's been asking me to take him to Mickey Mouse's Hat (Disney-MGM Studios) and the Pirates Dinner Show. He also starts chemo on Wednesday and this round of chemo makes him really sick and it takes a while for his body to recover (last time he received this combination chemo it was his 3rd round and he threw up for 3 weeks straight) I try to do something really special for him before he starts a round of chemo then that way he has something to look forward to while he is recovering. He actually dreams about Disney and he talks in his sleep. Just thinking about this fun things to do with him puts a smile on my face. I hate writing sad stuff.

(for me to remember)
His last eyelash fell off last night on his right eye. I was waiting for it so I can save it and put it in his scrapbook (sounds weird---don't ask) but I didn't catch it when I checked his eye, it was already gone. Oh well, his left eye still has 4 eyelashes left. I'll try to wait for the last one to fall off. (Yes, I am a weirdo, but I was hoping to save it for him so when he is grown up and I am showing him his scrapbook I can show him the last eyelash that fell off his eye.) I'm probably the only mother that thinks about this stuff. Oh well....

David wants to say hi to everyone...
david $12juokhbnm....,,,,opp]144544

Thursday, April 28, 2005 5:14 PM CDT

Thursday, April 28, 2005 5:11 PM CDT
Hello everyone! David is finally home! Yipeeeee!!! He is right now asleep on the couch exhausted from crying and screaming at me for changing his dressing earlier. (Actually we were crying together) He says that I hurt him, he doesn't understand that I have to do this every other day to make sure that the site where the tubing goes inside his vein does not get infected.
Normally, it is not this hard to change his dressing but he asked me if I could use the Island Dressing last time I changed him (the cloth kind), he likes it much better because it hides the site and all the little stitches is not visible, which is a constant reminder to him of his surgery. This stuff really sticks to his skin and I have to rub adhesive remover so I can just pull it off, it takes a looooonnngggg time, by the time I'm done taking the old dressing out, he is drenched in sweat, his eyes are filled with tears and so tired from screaming at me (I'm sure if he could use bad words, he'd be swearing at me) I don't take any of it personal, because the nurse that taught me how to change his dressing (Nurse Susan) said that it's ok for him to scream and cry as long as he doesn't kick me. He'll get over it and tell me he still loves me eventhough he kept saying he hates me while I'm changing his dressing.
I always make sure to remind him of how brave he is but he argues with me that he is not brave because he is just a cry baby. As he is saying this tears are flooding from his eyes and I just can't help it but cry too because I feel so bad for him. I wish I could take all his pain away, I wish I could just wave my hand over his booboo and make everything better again, but I can't!
The worse thing in the world is to see your child be in pain and not be able to take any of it away.

Thank you all for the encouraging and loving words you write to David and for thinking of him it means more than I can explain.


(for me to remember)
WBC 0.6
ANC 78
PLT 72
HGB 9.4

Wednesday, April 27, 2005 8:16 AM CDT

David is soooooooooo tired. He didn't go to bed last night until 2 am. His platelets dropped to 20 this morning and right now he is receiving Jerry's platelets. You see? It's always so nice to have blood in the bank. Michelle donated blood and it's ready today but it doesn't seem like he needs it. We'll save it for later (redblood cells has a shelf life of 1 month, but you can only donate every 8 weeks and platelets is only good for 5 days, but you can donate every 48 hours.)
His hemoglobin level went up to 9.9, so he won't be needing a blood transfusion. He starts his 5th round of chemo on Wednesday and this is the same combination of medicine that he received on the 3rd round (Etoposide and Cisplatin) it made him really sick he threw up for 3 weeks straight. He'll be needing redblood cells at least 3 times and he'll need platelets every other day as soon as his counts starts to drop until he recovers. The last time, he had about 3 or 4 platelets transfusion.
So far eveything is going great...but I have to go for now he has air trapped in his proximal line and I have to go get the nurse...I'll write more later....


(for me to remember)
Plt-20
Hgb-9.9
Wbc-0.1

Tuesday, April 26, 2005 7:34 PM CDT

David looks great, he's ready to go home...all he did today was play the playstation. He still didn't eat or drink anything. I wonder how he could not be hungry.
His platelets went up to 30 and his hemoglobin level up to 9, his ANC is still zero...so he is still severely neutropenic which means we are not going home anytime soon, unless for some reason, his white blood cells decide that they are going to be kind to me and start reproducing tonight so we can hopefully go home tomorrow.
David kept asking Jeanie (nurse) everytime the machine beeps when his medication is done, if it's over and we're going home. She just laughed at him....

(something for me to remember)
This morning he asked me if he was a boy and I said yes he is and he said "So Lexa's girl, Mommy's a grown up, Grandma's grandma and Daddy's gone to work!"
I laughed at him and said he is soooooooo cuuuuutttteee!!! and he said back to me "no, just silly!"

Monday, April 25, 2005 8:14 AM CDT

This is definately not a good morning to wake up to. Rebecca (nurse) woke me up at 6 am telling me that David needs a platelets transfusion RIGHT NOW.... he's platelets dropped from 35 yesterday to 11 this morning and he wouldn't be able to wait for Jerry's platelets because it's not going to be ready until this afternoon and Dr. Hajjar does not want to take that risk, he could be all the way down to 5 by then (internal bleeding)
He will also need red blood cells transfusion because he also dropped from 8 yesterday to 7 this morning, that one is not so bad, it's not such a dramatic drop. But he'll still need to be transfused.
All this time I thought I knew his pattern so I can always have blood ready in the bank, and OHHH NOOO...this stupid cancer does not want me ahead of the game!

ps
the platelets that David is receiving is so yellow, it looks like super concentrated pee....It's so amazing!

Saturday, April 23, 2005 6:19 PM CDT

David is back at the hospital, running a fever. He hasn't eaten or drank anything all day. He also threw up bile earlier...Yuck! All he wants to do is sleep. Thank God I didn't have to go to the ER coz Dr. Hajjar was at the hospital doing his rounds when I called. That made everything much easier. I also had Alexa with me and when we finally settled in the room, Marissa (nurse) took blood cultures from both of his lumens to see if there is bacteria or fungus, hopefully nothing grows. Poor Alexa, I thought she was gonna pass out watching the nurse draw blood from David...but David just kept smiling and telling her "look, Lexa! See? It doesn't even hurt!"
Today is his 11th day from the first day he started chemo so his counts should be coming up pretty soon and hopefully he doesn't have to stay at the hospital for long.
I will write more later....
p.s.
they took a series of MRI of his chest and stomach today. The lady was super nice!

Friday, April 22, 2005 4:21 PM CDT

David received a blood transfusion today and he is feeling good, he looks so much better with color. He is still severly neutropenic (ANC-0) But you would never know... right now he is riding his scooter in the living room and doing all kinds of tricks. He didn't eat much today though, the Dr's office had an end of chemo celebration for a boy named Alex and they had cake and tacobelle. David couldn't wait to eat some of that chocolate cake, he had 2 slices. So far that's all he's eaten today besides a scoop of coffee ice cream with chocolate syrup on top as soon as we got home.
He will be back on Monday to the Dr's office for a platelet transfusion and I just got off the phone with Jerry saying that the blood bank was closed already when he got there. Hopefully he can go back tomorrow to donate, it's so much better knowing who the blood is coming from.

Thursday, April 21, 2005 11:10 PM CDT

Today Jerry and I attended a support group dinner at the Ronald Mcdonald house and got to meet some other parents whose children are also battling cancer. Meeting these other parents and listening to their stories is such an awesome experience. I now know that everything I'm feeling and everything that I have gone through and going through, is pretty normal (for someone whose life is about living life day by day hoping that tomorrow will be a great day, hoping that he will eat, hoping that he won't run a fever, hoping that he will only need 1 blood transfusion.....hoping for things which I would never even think about)
I truly believe that our lives have been planned in the very beginning when God created us and only He knows what that plan is... David's cancer have made our family much even closer and our friendships stronger. Maybe it could be a test on how strong we are as a person, it's a pretty hard test but so far, I think I am going to pass.

Wednesday, April 20, 2005 1:19 PM CDT

Hello everyone!
David was at the doctor's office today to check his blood count and today he is severly neutropenic (WBC-0.5) his hemoglobin level is 7.1, he needed a blood transfusion today but the blood is coming all the way from Daytona (THANK YOU TAMMY CARBONARO for donating eventhough you hate needles so much!!!)and it was going to take an hour and a half to transport plus about 4 more to get it ready then transfuse it to him, the office closes at 4 or 5 and there is no beds in the hospital. Dr. Hajjar said that eventhough he is anemic, as long as he isn't lethargic then he can wait until Friday, unless he passes out today or tomorrow.
I went to see my orthodontist today (Dr. Robert Hicks---the best orthodontist on the planet) and their whole staff is willing to donate their blood for David a couple of them is actually type O. They also set up a donation box for him and so far they have raised over $100.00. Yeyyyy!!! Michelle (one of the nurses) gave me the money in the envelope and as soon as David got in the car he said "I'm rich!!! I'm going to Disney!!! Go me!!!
All the money that he has received has gone towards going to Disney and new games for his X-Box and Plastation2. As soon as he is feeling better we will take him to Disney at the MGM studios, ( he calls it Mickey Mouse's Hat)

Thank you all so much for your support and phone calls and cards and prayers and just for thinking of David.

Sunday, April 17, 2005 5:12 PM CDT

David is back home today!!!
He was so excited to come home, when I opened the door he yelled out "Surprise!!!"
He said that since Alexa had a birthday yesterday today was his birthday.
Good thing I bought two cakes (One decorated BRATZ ane one chocolate)
the girls didn't touch the chocolate cake because they only wanted to eat the Bratz cake...So today we sang happy birthday to David and ate yummy chocolate cake.
He was so funny, he asked me "How ever did you make that cake mommy?" "UMMM, UMMMMM.... So delicious!"
afterwards, him and Alexa played with the balloons and laughed and giggled with each other as if they haven't seen each other in ages. Hearing their joyous laughs and just watching them play together like as if nothing is ever wrong with David puts a smile on my face, today is a wonderful day....David is here!

Friday, April 15, 2005 10:15 PM CDT

David is at the hospital with his Greeemmmaaa! He just finished Day 2 Cycle 4 of chemo. He didn't eat much today. He kept saying that he wants to go home. He is going to be with his grandma Diane today and tomorrow. At 9:30 he called me at home saying he wants me to hold him like a baby on a tree top, I feel so guilty leaving him but I have to do my part for Alexa. She is having a party tomorrow and I've already cancelled it twice so this time I have to just be tough and let him know that eventhough I'm not with him, he will be taken such good care of because grandma Diane will be there at the hospital with him. ( She is the fun Grandma )
But nobody comforts him like mommy.........
I love you David.....

I put our pictures from Christmas for David to remember and what he has to look forward to this Christmas if he is done with all his therapy!

Thursday, April 14, 2005 9:37 PM CDT

OK, just want to let everyone know that David is fine. He just finished his day one cycle 4 chemo. He ate like a pig today. If any of you saw how he eats you would think that this is the first time he's ever seen food. He kinda reminded me of Hansel in the fairy tale story Hansel & Gretel, when they found the house made of chocolate and candy. For breakfast he ate half of the omelet, a whole waffle, a bowl of cheerios with 1/2 cup of sugar, a whole bag of popcorn for lunch, a slice of chocolate cake, chicken, spaghetti-o's and snacks here and there.
Anyways, I just went home really quick to take a shower and I have to go back to the hospital now to relieve Jerry, he has to go to work tomorrow and be Mr. Mom for Alexa.
I will write more tomorrow.

P.S.
There's new pictures taken from yesterday if you'd like to check them out.

Thursday, April 14, 2005 7:34 AM CDT

Good Morning Everyone!
Just want to let you all know that we are admitted at the hospital now but they didn't start chemo last night because Dr. Hajjar forgot to sign the order. His partner Dr. Selsky said to the nurse that he kept thinking about David so as soon as he finished his dinner he came back to the hospital to sign the order (THANK YOU DR. SELSKY!) but the pharmacy didn't have enough staff to make the chemo and the order has to be in before seven. How many doctors would take time out of their life to come back to the hospital just to sign a piece of paper after all days work? or even just think about a patient? You see? the doctors here are great!
Also yesterday was such a great day for David at the Dr's office. He got to finally meet all the other kids with cancer and he was so excited to see so many of them also bald. He's been so concious about his bald head because he thinks people stare at him because he doesn't have any hair. ( I don't know why that bothers him, he should be used to being stared at since he's always been different about hair styles...How many 3 or 4 year old do you know who has a mohawk or just their mothers coloring their hair?
I guess he just knows that this time his hairstyle is different not for fun.
WHAT HE DID YESTERDAY----
1) He met new friends and was very excited about that.
2) Doug and his Daddy played catch and legos with him.
3) His favorite person of the day is Doug. He thinks he is so cool. visit his website--- http://www.caringbridge.org/fl/doug
4) We went to lunch with Anna and her Mommy and ate wings and drank tea and lemonade. They had so much fun in the backseat while we were on the way to the wing place.
5) He met Danny and he told me he wants him to come to our house and he promises he will share his toys. You can also visit his website--- http://www.caringbridge.org/fl/dannyw
6)There's a playstation 2 at the doctor's office(he was never bored! Eventhough we had to wait 4 hours for his room to be ready)
7) We visited another little girl named Abbigail who was just diagnosed with neuroblastoma about 3 weeks ago. You can also visit her website--- http:///www.caringbridge.org/fl/angelsforabbigail
8) They've been hydrating him all night long so they can start chemo first thing in the morning.

Thank you all for visiting his website and caring about him. He loves it when I read him your messages so please don't forget to sign his guestbook and leave him a message.
I will add new pictures later of his new friends.

Wednesday, April 13, 2005 0:33 AM CDT

Hello everyone! Just writing a quick update... Tomorrow is Wednesday and we're back to the doctor's office first, then if David's counts are good, he will be admitted to the hospital...for his 4th round of chemo. If any of you are wondering what poison they are pumping into his veins...there's three combination,(1)Cyclophosphomide(2)Vincristine (3)Doxorubycin, one of these medicine he has to take with a medicine called Mesna to protect the liner of his bladder from bleeding. Anyways, he's already received these combination drugs twice and he did very well with them except for the throwing up and losing a lot of weight because of not eating from mucositis(sores or ulcer in the mouth or throat)
Please keep David in your thoughts and prayers while he goes through chemo in the next few days...
I will write more later....
P.S.
Alexa knew that David and I are going back to the hospital so she played sick in school today so the nurse had to call me to pick her up...I didn't have a car today so Cecily had to pick her up (THANKS CECILY!)What can I do about this she knows I'm not going to see her for a few days...She is too smart! (Takes after her mama, I remember doing the same thing when I was younger, I would pretend to be sick so I can stay home and be pampered by my grandma)I love my children!

Tuesday, April 12, 2005 0:26 AM CDT

Stephanie & Cesar,

I cannot find the words
To say to you two,
You’ve both given us everything
Including your blood too.
You are the ones
Who understand us most
And share our joy and pain.
The friendship we have
Grow stronger everyday
And contains a bond
I cannot explain.
We may not have lots of money
Or a fancy car to drive
But I know in my heart,
A treasure I hold,
Having you both
In our lives
Is worth more than gold.

A poem from Sarah
copyright March 29th, 2005

Monday, April 11, 2005 7:50 PM CDT

Today was a great day! We went to the doctor's office to check his blood counts and both his platelets and ANC (absolute neutrophils) are up, his hemoglobin level (red blood cells) is 8. something, i forgot for a minute, but they didn't go up and Dr. Hajjar said they are not going to go up unless he has a transfusion.
We will go back to the office on Wednesday and if his counts go up a little more, he is going directly to the hospital to be admitted to do his 4th round of chemo...poor little guy barely just recovered. He just stopped throwing up a few days ago and now he has to start over again....
The last time I was driving him to the hospital he started crying and said I was going to get him sick...I just don't know how to explain it better to him....
At least he got to ride his bike and ride the chopper with his daddy today...that was fun!

Saturday, April 9, 2005 11:15 AM CDT

Good morning everyone!!!
Nurse Susan just came to take my blood work, we will find out the results later. I'm sure my mommy will let you all know the results. I'm feeling very tired still, but I got to ride my scooter earlier after I ate my breakfast, I had strawberry oatmeal and waffles it was YUMMMMY!
OK I'm going to cuddle with my mommy now, she always makes me feel better :)

Friday, April 8, 2005 0:24 AM CDT

HI EVERYONE!
It's me David!!!
I can't sleep so my mommy is reading to me the wonderful things that you all have to say to me.
I told my mommy I wanted hearts on my homepage so she changed it for me... Do love it?
I have to go now, I feel funny so my mommy is going to hold me like a baby on a tree top now...GOODNITE!
LOVE,
DAVID

Thursday, April 7, 2005 2:05 PM CDT

Hello everyone!!!
David is finally home today and he is doing well.
His bestfriend Cyrus came to pick us up @ the hospital and he got to stay and play with David for a little while. David was so happy to see him, I wish I had better words to describe how these two looked and reacted towards each other when they came to pick us up.
He will need a nurse to come to our home for his blood counts because it seems as if he is not recovering at all eventhough he just had a transfusion yesterday, his platelets only went up to 50. He will probably need to be transfused again on Saturday...
For now I have to make phone calls to find a donor for platelets and probably red blood cells because his hemoglobin count is also going down, yesterday it was 9 and today it was 8. I gotta call Michelle...and Stephanie if you read this...we kinda need your blood also please?

Thursday, April 7, 2005 2:33 AM CDT

Ok...this is the third time I am attempting to write a journal entry...I am going to try to make it short because the first two times I've accidentally hit a button and my whole entry got deleted....
David has been in the hospital since Monday for a fever. He hasn't been feeling very well from the chemo he received but he still looks good. Today he received a platelet transfusion because he had dropped all the way to 10 (normally you need at least 200)He only threw up once this morning and he hasn't had a fever all day...hopefully we can come home tomorrow...
I want to thank those who took their time to sign David's guest book and to let us know you care, it means so much to me that I am letting everyone know I shed a few tears. THANKS EVERYONE!

Saturday, April 2, 2005 7:49 PM CST

Here’s a beautiful poem a friend wrote for David

David’s Poem
By JoAnn L. Welker-Kelner
January 29th, 2005

Your child, their child
Child of us all,
This child dares down dimpled dragons
With the courage and charisma
Of a four-year old
And his mother’s eyes.

He cleans up dank and dingy corners
No one ever saw before
With his smile
And with a father’s love
And tears those eyes reflect.

He casts unimportant pallor
Over used-to-be battles
Bound by his grandma’s skies,
And any and ever maybes-to-come
She now conjures up, or not,
Become silhouette’s shadows
In the prisms of those eyes.

And he does a doleful dimpled dragon dance
To the rhythm of his sister’s beauty protected now by the eyes
And the smile.

Your eyes, their eyes
Eyes of us all, these eyes…
Trust the dismal danger dragon
At least for now
Not to turn off the smile
Of this child
With the courage and charisma
Of a four year old
And his mother’s eyes.

Friday, April 1, 2005 2:56 AM CST

It's after 2 am, I can't believe they actually sent us home this late, he just finished his blood transfusions (both platelets and red blood cells) and he is looking good. There's color in his lips and I can finally let him ride his scooter tomorrow. He still has to wear a mask whenever he is around Alexa especially when we have to go somewhere because he is still Neutropenic (no immune system) His white blood count today is 0.6.
My poor Alexa was crying hysterically when I dropped her off @ Cecily's house, she wanted to go with me to the hospital. Thank God I decided not to take her, otherwise she's not gonna wanna wake up for school tomorrow. I hate leaving her, I wish there was an easier way to deal with this...

Thursday, March 31, 2005 11:25 AM CST

I just got home from the doctors office and David needs a blood transfusion today. I have to go back to the hospital @2 and will probably be there till 9.
He isn't trowing up as much today. He's very pale but I'm sure that once he gets his Daddy's blood in his system he will be back to normal. Last night he asked me if he could ride his scooter but I couldn't let him because his platelets are low and he could just bleed if he falls. He promised he will not do a palaleli (pop-a-wheelie)and that he will only go round and round in circles. He is too cute!!!

p.s.
thank you all for the messages...It's so great to know that we are not alone in this battle and that there are people out there, some we don't even know, are thinking about us.

March 29th 2005 2:33 PM CST

David just finished his third round of chemo...He is really sick. He's been throwing up and hasn't eaten in almost 2 weeks. He lost the weight he just gained back. But there is good news, the doctor said that his tumor has shrunk 30 percent and his bone scan came out negative. We won't find out about his bone marrow until later on.

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