Journal History

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Saturday, June 23, 2007 8:15 PM CDT

Nicholas’ Aunt Yvette participated in the American Cancer’s Relay for Life. We were very excited for her and asked her to write down this experience for her. Here is her story.


This past weekend June 15 & 16, I took part in the American Cancer Society's 'Relay for Life." For those who are unfamiliar with this event let me explain what it is.

It consist of a team of no more that 15 people, each walking around a track at different times. Someone from your team must be on the track at all times. It begins at 6pm Friday and ends at 6am Saturday. Our team consisted of family, friends, and co-workers each walking for someone we love. We pooled our resources and provided supplies for all of our team, It was like going on an overnight camping trip so you can just image everything we brought; except we could not bright a grill or barbecue.

I arrived first at 5pm to start setting up our campsite. We could not park on the school track so we had to carry all our supplies back and forth. I'm exhausted and the event has not even started yet. Our team leader, Nancy; purchased 2 cases of blinking lights similar to a chain around your neck that kids wear at the circus. That was the best idea, because as we were putting them on people would come over and ask can they have one. As it was getting dark everyone had one.

I had 2 luminary bags made for Nicholas that needed sand and a candle, looking around I noticed the crew filling them and placing them around the entire perimeter of the track. I knew that Helene and Jose had purchased a luminary bag and I wanted to find it and place them in front of our campsite. I asked them if they found a bag with the name of Nicholas Castillo and can I have it because he is my nephew? If was as if I was supposed to find his bag, it was right there in front of this large pile. We all started laughing but guess what they said, "we have lots of bags with Nicholas’ name. I grabbed a total of 8 bags and placed them in front of the campsite. It’s funny I waited till the very last day to decorate his luminary bags and looking through a couple of People magazines and Viola it all came together. The 2 bags I made were decorated with Nicholas’ favorites. My friends Tigger and Pooh and the other one had pictures of sunglasses a cowboy hat a large green M&M and his ultimate favorite the Guitar with the saying “Thank God I'm a Country Boy”. It was him, my Nicholas

At 7pm the opening ceremony began the Girl Scouts held the flag. Introductions were made for various people and then a woman sang "Hero." A man told of his battle and being in remission after which the walk began. At first all survivors walked wearing purple shirts, then immediate family members and caregivers, at long last everyone else.

Our team leader assigned everyone a time but she said all was flexible we could walk as much or as little as we liked. I was scheduled to walk at 9pm with my friend Debbie Gallo. Little did we know that we had the best scheduled time. They started lighting the luminary candles around the entire track and with everyone wearing those blue blinking lights that we gave out it looked like stars sparkling in the night.

The overhead lights on the track were turned off and they asked everyone to please be quite, allowing all those who have lost loved ones to reflect and honor them. You could hear a pin drop. In the distance you heard someone playing 'Amazing Grace' on a lone bagpipe. He walked towards the track and everyone stopped. When he reached the track those of us walking followed right behind him. All you saw was those blinking lights. I know in my heart that Nicholas was right there with me. We were following the Pied Piper. The man playing the music meant more to me then he will ever know. I wanted to cry but I did not. I was not sad as a matter of fact I was very happy and smiling. After the music man walked and played for one entire lap he left walking alone in the dark.

The lights on the field were turned on again and with the glow of the candles inside I was able to read the names on the luminary bags. It was then that I noticed Nicholas' name on so many bags. They were not just in one spot, but throughout the entire perimeter. I counted a total of 54 bags honoring him, 28 on one side of the track and 26 on the other. I couldn't believe it, it was so overwhelming. So many people must have purchased bags on his behalf. The walk ended at 6am. I walked all but 2 hours. It has taken me two days to recuperate but it is a small price to pay. The event raised over $50,000.

I must thank all who helped me, especially my sister Marie who without her love and support I would not have been able to reach out to so many. Helene, Jose, Marie and Heather, together we can do anything.

To the moon and back.

Love Yvette


Thank you all so much for your generous donations in Nicholas’ honor. Yvette was able to raise about $1000.00 (with the donations and luminaries combined). Yvette we owe you a foot massage. Thank you so much to Nicholas’ Aunt Marie and Heather for reaching out to so many people and asking for donations. This event has touched us so deeply. Nicholas is extremely happy to know that he has so many friends.

With all our love,
Chooch, Helene, Christian and Nicholas.

Thursday, December 14, 2006 7:41 PM CST

It has been a very long time since we have written. It has been very difficult for us. We visit Nicholas’ site many times a day as well as all the other children at Caringbridge sites. I read how all the other children are doing and how all the families that have angels like Nicholas are coping everyday.
Much has happened since we moved to Florida. Helene now works at Give Kid’s The World. She is a Wish Granter and works closely with Kids Club. Kids Club is for children here local still battling there life threaten condition. They have a Big Party once a month at GKTW and often get free tickets to parks, restaurants and the Orlando Magic games.
I also volunteer at GKTW. It is such a wonderful place. I often go by myself to visit GKTW. There has been a time or two during the mid afternoon when no one else is around because everybody is at the parks having a great time.
I would sit by the garden next to the chapel very quietly. I could hear laughter coming from the air. I would gaze up to the sky by the direction of the train and I could faintly see children angels dancing, playing and laughing. At first I thought it was due to the tears in my eyes but, I would wipe them away and still could just see and hear them. I visit GKTW often and this has happened to me twice while I was very quite and no one is around. Since I often take Christian it is never quite.
Christian has grown so much He is our other sunshine. Christian often talks about Nicholas, his favorite big brother. There have been times late at night when, everyone should be asleep we hear Christian talking to someone. We would snick to his room and watch him talking. I often wonder if he is playing with Nicholas. I have not interrupted him because I guess I don’t want to spoil the moment.
We went to Christian’s Pre-K Thanksgiving party. Christian’s class had a Thanksgiving musical. All the kids in his class were all dressed up as pilgrims and Indians. Christian was an Indian. After all the songs were sung, each child had to say what they were thankful for. Well, Christian was the last one to speak and when he said “I am thankful for my Mommy and my Daddy and my big brother Nicholas who plays the guitar for me. I had gasped! He was looking at us so proudly and I tried so hard to hind my tears. At that moment I felt some thing is my heart open. Almost like the eyes of my heart was opening. It has been very hard for me to say what I am thankful for all this time.
After hearing those words of thankfulness from Christian it made me dig very deep into my heart to see what I am truly grateful for. I will mention two very special people I am thankful for, my two boys.
Nicholas who has shown me no matter how many hardships the road may have there is always time to share a laugh, a smile, a hug, sing songs, play his guitar, and most importantly to Nicholas make a new friend. Nicholas could find joy in the simplest things. He would find these small white flowers, which grew all over the woods in our back yard in North Carolina. When Nicholas found one he would pick them especially for his Mommy. These small little white flowers would brighten her day so much.
It didn’t matter how many people were in the room when Nicholas would yell out “HUG TIME” everybody in the room was expected to get all together for one very big hug with him. Nicholas new no strangers, everyone was his friend. Most importantly Nicholas needed to have play time everyday. No matter how bad things got Nicholas would say “Hey I didn’t get to play yet today! His love for music was the most incredible thing I notice about Nicholas. You would hardly ever see him without his guitar and at 3 years of age he asked for a violin. I remember watching his Grandma teach him how to play. Nicholas was very determined little boy. When Nicholas was not able to use his right arm any more we added a shoulder strap to the guitar and we flipped the guitar over so he could play with his other hand. Nothing was going to stop him from playing his guitar.
I remember a time after one of Nicholas brain surgeries he was walking around the hospital with stickies all around his head bandage and wearing his stethoscope playing Doctor. He heard a woman crying and walked in her room. The Mother was on the bed crying and the daughter was sitting in the chair. Nicholas went to the crying mother held her hand and asked her if she was ok. They talked for awhile and Nicholas went on his way. I later found out from the Mother that the little time she spent with Nicholas he gave her much joy, strength, and hope. She said he was an Angel sent to help her. Her daughter was scheduled for brain surgery as well. She also had Glioblastoma Multiform brain tumor. I hear many stories from people about Nicholas and his warmth and friendliness. I love you so much my little prince.

Christian is my rock. I lean on him so much. Christian is so shy. He is now slowly coming out of his shell. He watches over his Mommy very closely. We have to be very sensitive around him during our time of grieving for Nicholas. He will come running saying Mommy, Mommy you ok, you ok! Then he would yell out big hug! It’s time for a big hug!
We had a hard time putting up the Christmas tree. But he is always so excited when we put the tree up. This year as we were putting up the tree he was singing Christmas songs and dancing all around. We got Christian a drum set. Which he enjoys playing very much. It seems he likes to play mostly in the morning. We are working on trying to change his practice time. Christian has a very strong love for trains. He has the Thomas the railroad collections and plays with it everyday. He can’t get enough trains. In his pre-K class the teacher says that’s all Christian talks about is trains. I’m thinking of giving him the nick name Choo-Choo but I do not think his Mommy would like that.

Thank you, all for continuing to visit Nicholas website. Thank you for the two trees that are now planted for Nicholas and thank you for the five stars that are named for Nicholas. To all our family and friends who have been they’re for us thank you from the bottom of my heart. As we struggle with our faith we hold onto the promise we will all be together one day having HUG TIME.

Love always Nicholas Daddy
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To my angel Nicholas I love you to the moon and back and to infinity and beyond. When I’m home alone I enjoy playing your guitar and hear you singing with me. Please send another sign like the cloud shape into a guitar. That was really great. You are always in our heart my prince. Send Mommy showers of your favorite cotton candy smell so she can smile again. I can’t wait until we are all in heaven having the best big hug ever. Don’t keep Christian up to late when it is a school night ok.
Nicholas keeps watch over us. Titi Re, Titi Vet, Grand Ma, cousin Lilly, Titi Hilda, Mommy, Christian, I and many of your family and friends will have your five Christmas candles out shining bright for Christmas.

We all love you very much.

Love to the moon and back 5 times,
Daddy



I forgot three things I wanted to mention just before I was going to post this.
Ever since we moved out here to Florida I have not seen that special white flower which use to grow in North Carolina. Well, Thank you so much Nicholas for planting one right next to your favorite swing set Grandma gave you. They are beautiful it’s funny there are no weeds in our back yard and only that one set of wild flowers. Nicholas you made us smile again.
Two days ago I was in a car accident. I had to go to ER the next day because I was complaining that my head back and neck. It was really tough being in ER again. It brought back all the times we had to rush Nicholas to ER. Helene came with me and was not handling it very well. I was sent to have x-rays and a cat scan done. While Helene was in the room waiting for me she became really upset and began to talk to Nicholas asking him for help, all of a sudden she was showered with the smell of cotton candy the same one that reminded her of Nicholas. She asks Nicholas to go comfort daddy. When I got back Helene was smiling. I told her it was rough at first but then something happened. She said me too. I said you go first because you are not going to believe what happened to me. She started to tell me about being showered with the smell of Nicholas cotton candy. I laughed; I told her as I went inside the cat scan I was thinking hard about Nicholas and how he went through so many of these; just as I was getting scanned a big smell of cotton candy came over me. I smiled and thanked Nicholas for being there with me. Helene and I laughed out loud. Thank you Nicholas for helping Mommy and me.

Thank you, all for everything. Merry Christmas!!

Thursday, May 11, 2006 1:15 PM CDT

HAPPY BIRTHDAY TO YOU,
HAPPY BIRTHDAY TO YOU,
HAPPY BIRTHDAY TO NICHOLAS,
HAPPY BIRTHDAY TO YOU.

WE ARE GOING TO BE PLANTING A TREE FOR YOU. WE LOVE YOU AND MISS YOU SO MUCH. TO THE MOON AND BACK.

LOVE,
MAMA, DADDY, AND CHRISTIAN
MIMI AND XENA TOO

Wednesday, December 28, 2005 9:19 PM CST

WE UPDATED PICTURES

Sorry for not updating … it just so difficult. We find ourselves trying to update but can not. We have finally settled some what in our new home in Florida. We have put things of Nicholas all over the house. Every room has something that belongs to Nicholas. Unpacking is very painful so many reminders of our angel. Moving closer to family has been great. Christian is really getting to know everyone. We miss North Carolina very much. However without Nicholas anywhere we go will not be the same. Christian is growing up so fast. He loves music also. However Christian took to the drums. He loves to bang away. We talk to Christian about Nicholas everyday. We try and tell Christian that Nicholas is with Jesus in Heaven but he tells us no that Nicholas is in New York at Grandma and Papa’s house.
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They say with time it will get easier. I don’t believe in that saying. This past Christmas is the 2nd year we are without our son Nicholas. We celebrated it with mixed emotions, still grieving for Nicholas, but also celebrating it with Christian. We didn’t want to buy a tree or put up decorations and yet we need to keep celebrating for Christian. We put up our tree and decorated it and he was so excited. He kept thanking us for “the beautiful tree”. Christian kept saying and bowing at the same time “Thank you, Thank you,” We found so many beautiful ornaments that Nicholas made. We even found a Christmas stocking still full of presents for Nicholas. This Christmas we gave many of Nicholas toys to Christian and told him Nicholas wanted him to have it. I got a Guitar Christmas ornament again this year. It was such a nice surprise.

We placed our 5 candles outside as well as inside and are glad to know that our extended family has also continued with this memoriam for Nicholas. We also visited the
Angel statue in West Palm Beach and placed some flowers. For those who are not familiar with thAngel statue. It is for parents whose children have died in honor of those children. The statue is in a park next to the water and near a playground. It’s so peaceful there. Christian played in the playground he was having such a great time. We were glad to have visited the statue and stayed afterwards at the playground. We used to celebrate “family day” and it sort of felt like that. I miss those celebrations and it felt really good to have done this.
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Thank you,

All for visiting Nicholas' site and leaving messages. Also thank you all for keeping Nicholas and us in your prayers.

Nicholas, my little Angel we miss you and love you so much. We count the days when we will all be able be with you. We love you to the moon and back and to infinity and beyond!

Saturday, May 14, 2005 1:05 PM CDT

HAPPY BIRTHDAY NICHOLAS!!!!!

We miss you so much. I know everyday in heaven must be better then all of our birthdays here on earth. Nicholas my son you are in my mind, heart, breath and tears everyday of every moment. I count the days when we are all together again for we can have our family hug time and butterfly kisses. I ask our blessed Mother to give you big kisses and hugs for us. Nicholas all our love, hugs and kisses are going up to heaven to you baby.
To the Moon and back my love.
Love you forever,
Mommy, Daddy, little brother Christian,
Mimi and Xena too.

Thursday, April 28, 2005 8:20 PM CDT

Sorry, we have not updated lately we have been still struggling in many ways. We have so many things we want to do but we are still grieving heavily.
One of Nicholas dear friends Haley wrote about Nicholas in a book report for class.
The title is My Hero. She wrote how during all his pain that he was going thru he always smiled and wanted to play. I will be scanning the report to post it with more information very soon. Thank you so much Haley for writing about Nicholas.

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The 2nd annual Ride for Kids in Cary NC!!! May 15th Rain or shine is coming up again. Please come out to ride. It will be Supporting Pediatric Brain Tumor Foundation. http://www.ride4kids.org Nicholas loved Motorcycles. Last year we could not get Christian off the motorcycle.
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I apologize for posting this late. It is on Saturday April 30th, My Cousin Lilly and her friends will be participating in the 8th Annual Revlon Run/Walk for Women. You can join her in the fight against Cancer. I proudly help and post this for my cousin because I know of many brave women who once they found out about Nichols and his brain tumor helped us everyday to help Nicholas. Please visit the website http://www.revlonwalk.com/ny

Nicholas we miss you everyday, we know you are in heaven and singing and playing all those musical instruments. Christian misses his big brother very much. My angel we love you to the moon and back! To my Bestest Friend, remember I sing one of your songs everyday “Are you going to be sincere?

Love you always
Mommy,Daddy and Christian

Sunday, February 13, 2005 7:07 PM CST

Hello All:

We are in our new home and unpacking little by little. Our strategy was to unpack and then donate a lot of extra stuff. However each time we unpacked a box we find something that reminds us of Nicholas. It then unpacking stops. Yesterday I was unpacking the video boxes and I found pictures I hadn't seen in a long time. I started to cry. I have been trying not to cry in front of Christian (I know he get's worried) but I couldn't help it.

I've heard the phrase "he's in a better place, he's at peace, blah blah blah. How can it be better if he's not with his mom and dad, surrounded by his family and loved ones.

There is a picture of Nicholas where he's looking very sad. I remember taking the picture and him saying "it's not fair". I used to say I know baby it's not but things will get better. Now all I can say is "IT'S NOT FAIR!!!!!


Mommy love's you to the moon and back.

Sunday, December 26, 2004 7:19 AM CST

We love you our precious Angel Nicholas.

XOXOXOXOXO

Saturday, December 18, 2004 9:02 PM CST

We wanted to thank everyone who has been so kind and understanding to us during our time of sadness. We try and remind ourselves everyday how our Angel Nicholas made every day fun no matter how horrible or painful it was for him. I remember at times when things were not going well for Nicholas or he just got out of surgery he always took advantage of every second to have fun. Nicholas was never one to mope around and feel depressed. We have always been amazed at Nicholas will to always look at the brighter sides of things. So for the love of our children Nicholas and Christian we put up a Christmas tree. The night we put it up and finally turned on the lights was so hard for us. Helene and I both cried for our Angel Nicholas.

Christian loves banging on things so Santa will be bringing a drum set for him. Nicholas has been the last person to play his guitars. I will try and muster up enough strength to play it for our Angel. Christian and I will be playing for all the Angels and caringbridge families on Christmas day. I’m sure our dogs Mimi and Xena will be singing along too.

I have not told anyone about this but many people in my family have had dreams and visions of Nicholas. They all tell me he is jumping, laughing and playing. For a while I was sad I did not have any visions or signs from our Angel Nicholas. Helene has had some but gets so excited she jumps out of bed and they are all too short.
I have been praying to be able to see Nicholas and spend some time with my baby.
(As many of you know when ever Nicholas talked to you or wanted your attention he insisted you make eye contact. If you did not he would grab you chin and force you to look at him). Well 3 weeks ago I was woken up by a pull on my chin and there was my Angel Nicholas. He came really close to my face and whispered “daddy you have to listen, Daddy you have to listen” then a came a bright light and he had left. I cried because this was not a dream and I felt everything. I have dreams of Nicholas now but I can’t seems to control myself I started hugging and kissing him and asking him so many questions like “Has he been good to Jesus”? , “Has he been good to God”? “Are you being a good boy”? I don’t let him get a word in edge wise then I jump up and Nicholas is gone. I guess when I learn to listen and calm down Nicholas will have much to tell me.

I felt we had another visit from Nicholas, it was at the movies. While Helene and I were waiting for the movie to start a little girl she said she was 51/2 years old started singing “You are my sunshine my little sunshine” This was Nicholas song. We sang it him when he was a baby” I did not know many songs at the time. It was the Marine Corp. Hmm or you are my Sun Shine” Nicholas enjoyed both as a baby. This upset Helene very much but after we came home we realized it most have been Nicholas saying hey.

We ask you light a candle for our Angel Nicholas on 12/26/2004.

Please continue to pray for us as Helene, Christian,our family and I grief for our Angel Nicholas and the many families that are grieving during this Holiday season.

May you all have a safe and wonderful Holiday?

Angel Nicholas we love you more everyday. You are my “Bestist Friend” (As Nicholas would tell me.)

God bless everyone,
Love Nicholas Daddy

Thursday, December 9, 2004 3:30 PM CST

I saw this on Cheyenne’s web site and felt I should post it on Nicks to get the word out. I could not have said it any better. Thank you Cheyenne’s Dad.

The Compassionate Friends, an organization of bereaved parents, is having their 8th Annual Worldwide Candle Lighting on December 12th at 7pm in each and every time zone, as we remember all children that have gone to Heaven. With everyone’s participation, there will be candles burning in memory of all our children throughout the entire 24 hours of December 12, 2004. Please participate if you can and please pass this information to everyone you know. This is quite a tribute to our wonderful children that have preceded us. Thank you!!

Also if you have an opportunity visit the Candlelighters Foundation website. They have a Cancer Awareness Christmas Tree this year with ribbons in memory of, or in honor of many of our special children. For each donation of at least $5 a ribbon is placed on the tree along with a little message. Their web address is:
Candlelighters.org.

Sunday, November 28, 2004 1:09 AM CST

Hello everyone, Thank you all for your continuing prayers and support. It has been some time since we updated and after visiting our caringbridge family websites everyday and seeing how they help and inspire us I wanted to write in hopes we can help some families out there also. We still struggle every day mostly in silent. Helene and I grieve very differently, I explain to people that we are walking this road together holding hands but many times looking in different directions for answers and peace.

We miss our Angel Nicholas so much some days are just so unbearable. We still cry everyday. We long to hold him again and hear him sing and play his guitar. We count the days when we will all be together in heaven.
Nicholas and I were in the process of writing a song but we never finish it. Thanks to “Songs of Love” Nicholas song was able to be completed. I will be posting Nicholas Song soon. Visit www.songsoflove.org
It has been so long since I have heard his guitar we just can’t bring ourselves to play it yet. I plan play it with our little one Christian. Christian is doing well and getting very big. He is a drummer and loves to bang everywhere and everything. When he gets his drums from Santa Clause I think I will take out Nicholas guitar and play with him.
When we are playing with him and laughing he sees us smiling then crying I feel we are confusing him all the time. He is very close to his Mommy. They are in separable, I feel Christian knows what has happened and is very attentive to Helene.
Helene has volunteered at “Give Kids the World” a couple of times now and I hope to also one day volunteer but, to be honest, I so love that place but can’t seem to stop the tears as I enter, I was so over whelmed with such a feeling of beauty. I now know one of the places Angels go to have fun. I could hear all the children and Angels laughing at “Give Kids the World” is truly a bit of Heaven here on earth. It made me miss my Nicholas so much. We saw Nicholas brick and star at it is so beautiful.
We are trying very hard to prepare ourselves for the holidays. Thanksgiving was pretty hard but I believe Christmas will be the hardest. We will have family around which I know will help so much.

These caringbridge Children are so amazing I wanted to share a statement that Angel Maddie wrote on her site last year. She says it all.

"As Thanksgiving rolls around again, I ask you to give your thanks for everything in your life. Thank God for each night you get to kiss your child to sleep. Thank God for each time you have to get up at night and make your son or daughter a bottle. For each assignment that your child asks for help with. For every basketball game that you get to watch your son or daughter playing in. For each call you get from your spouse every day. For all the loved ones that you hold close to your heart. Even for your messy house that you have to clean all the time, Mom. Because it only means that your family is carefree, something that many families can't be. Thank Him for everything, cherish each moment, each smile or hug. Because you never know how quick all that could be taken away from you. You'd never know how much you could miss your child asking for help with their homework, or rocking your little one to sleep. Please, this holiday season, go out of your way to make sure that you aren't taking anything for granted. That you are living every second of life and getting as much as you can out of it. These last six months have shown me how to be thankful, and what to be thankful for. So, this Thanksgiving, thank God for everything that matters to you! Even for the smallest things. And encourage others to do the same....
Thanks-and I mean THANKS,
Maddie
Visit ANGEL MADDIE’S

Monday, October 4, 2004 3:24 PM CDT

Today we went to Epcot. It was Jose's first time we visted since we last went as a family on Nicholas' Make-A-Wish trip. It was an emotional time for us. So many memories came flooding back to us. At times I was able to visualize Nicholas running back and forth, even hearing his laughter.

I showed Jose our tile on the legacy wall. Man am I so glad that we did that. Now when we visit I can alway see him there and know that he's with us.

Marie said that she know's Nicholas would be happy that we moved to Florida. He was extremely happy here and loved going to Disneyworld and that he wouldn't want us moping around. He wasn't that type of person so we shouldn't be.

Sunday, August 15, 2004 7:22 PM CDT

Sorry it's been so long since our last entry. We are moved into our new apartment here in Orlando and are starting to get used to the area. I was afraid to leave North Carolina. So many wonderful and sad memories. I felt like I was leaving Nicholas behind and didn't really want to leave. But then I had to remember that this is what Nicholas always wanted. When we first talked about moving to Florida before he was diagnosed his immediate reaction was "great let's get packed". He loved the idea of being closer to Mickey Mouse.

Now that we are in Florida I don't have that feeling that we left him behind. I see and feel Nicholas. We've been to the Magic Kingdom and I can remember when he danced to the music of the band on Main Street. In Epoct have a family picture on the legacy wall. So now anytime I want I can see him when I go to Epcot. We aren't very far from Give Kids The World so I can visit anytime I want and also plan on volunteering there.

Christian is adjusting very well here too. He's now in daycare and loves playing with his new friends. It's nice living closer to family. I really do think Nicholas would have loved it.

Love
Helene

Saturday, June 26, 2004 1:45 AM CDT

Well, I know I have not written in a long time but it is difficult for us.
I still check this site everyday and all the other Caringbridge sites.
As many of you may know we have put our house up for sale.
We did this with many mixed feelings. We started in February and did not do much at all.
During the packing I would find the littlest thing to set me off and have to stop.
The house sold very quickly. We will be leaving to Florida soon. We will surely miss our neighborhood and all the wonderful people. The Neighborhood fundraiser in memory of Nick raised $150.00 dollars thank you all again so much.

Nicholas tree is growing very well. It is the most beautiful tree around. I wish we could take it with us. But then I’m glad it will stay for Nicholas friends to remember him. The kids all ask when can they climb the tree but everyone tells them not until the tree reaches the top of the house. It’s a two-story house so I think it will be a while before anyone will be climbing Nicholas tree.

We chose Florida because many of Helene’s family and mine are living out there now.
We hope by being near family it well help us with our everyday struggle.
We invite all of you to stop by when you’re in the neighborhood. You will find us volunteering at Give-Kids-the-World.
Watch out for the Florida roads Helene is talking about getting a motorcycle so she can ride the kids in the Ride-4-kids fundraiser.
Christian is growing up so fast. We often look at pictures and he points out his big brother Nicholas.
Thank you, all for continuing to stop by Nicholas site.
Love to all

Nicholas Dad

Saturday, June 26, 2004 1:45 AM CDT

Well, I know I have not written in a long time but it is difficult for us.
I still check this site everyday and all the other Caringbridge sites.
As many of you may know we have put our house up for sale.
We did this with many mixed feelings. We started in February and did not do much at all.
During the packing I would find the littlest thing to set me off and have to stop.
The house sold very quickly. We will be leaving to Florida soon. We will surely miss our neighborhood and all the wonderful people. The Neighborhood fundraiser in memory of Nick raised $150.00 dollars thank you all again so much.

Nicholas tree is growing very well. It is the most beautiful tree around. I wish we could take it with us. But then I’m glad it will stay for Nicholas friends to remember him. The kids all ask when can they climb the tree but everyone tells them not until the tree reaches the top of the house. It’s a two-story house so I think it will be a while before anyone will be climbing Nicholas tree.

We chose Florida because many of Helene’s and my family are living out there now.
We hope by being near family it well help us with our everyday struggle.
We invite all of you to stop by when you’re in the neighborhood. You will find us volunteering at Give-Kids-the-World.
Watch out for the Florida roads Helene is talking about getting a motorcycle so she can ride the kids in the Ride-4-kids fundraiser.
Christian is growing up so fast. We often look at pictures and he points out his big brother Nicholas.
Thank you, all for continuing to stop by Nicholas site.
Love to all

Nicholas Dad

Saturday, June 26, 2004 1:45 AM CDT

Well, I know I have not written in a long time but it is difficult for us.
I still check this site everyday and all the other Caringbridge sites.
As many of you may know we have put our house up for sale.
We did this with many mixed feelings. We started in February and did not do much at all.
During the packing I would find the littlest thing to set me off and have to stop.
The house sold very quickly. We will be leaving to Florida soon. We will surely miss our neighborhood and all the wonderful people. The Neighborhood fundraiser in memory of Nick raise $150.00 dollars that you all again so much.

Nicholas tree is growing very well. It is the most beautiful tree around. I wish we could take it with us. But then I’m glad it will stay for Nicholas friends to remember him. The kids all ask when can they climb the tree but everyone tells them not until the tree reaches the top of the house. It’s a two-story house so I think it will be a while before anyone will be climbing Nicholas tree.

We chose Florida because many of Helene’s and my family are living out there now.
We hope by being near family it well help us with our everyday struggle.
We invite all of you to stop by when you’re in the neighborhood. You will find us volunteering at Give-Kids-the-World.
Watch out for the Florida roads Helene is talking about getting a motorcycle so she can ride the kids in the Ride-4-kids fundraiser.
Christian is growing up so fast. We often look at pictures and he points out his big brother Nicholas.
Thank you, all for continuing to stop by Nicholas site.
Love to all

Nicholas Dad

Sunday, May 16, 2004 2:12 PM CDT

To Our Blessed Angel Nicholas,

HAPPY BIRTHDAY my sweet Angel.

To be honest Helene and I were very afraid if we would be able to handle May 14 which would have been Nicholas' 6th birthday. I took off from work so we all could be together. The morning started out very quiet and the rest of the day was very peaceful. We started getting phone calls from family and friends very early Friday. Thank you all for the phone calls. Many people called and emailed that they were lighting candles for our Angel Nicholas, which was very comforting for us.

The tree planting was so beautiful. A lot of our neighbors were there for support. The tree is so big and full of leaves. I’m sure Nicholas would have loved it. I would like to personally thank everyone for their envolvement in the tree planting from the bottom of my heart. Cary news was there also. Pictures will follow. We also let balloons go at the tree planting.

Heather and Taj had a special moment for Nicholas at the beach in Long Island, which was one of Nicholas favorite places.

We had a special lighting for Nicholas at night. Nicholas Aunt Marie told us she tried lighting six candles but only five would stay lit. We were excited because here only 5 candles would stay lit also. Nicholas favorite number was five. So we said ok Nicholas only five candles it shall be. Nicholas Aun Marie also got Nicholas a piece of the moon.
To the Moon and back Nicholas.

Dear Nicholas,
So many people honored your birthday, everyone let go of so many balloons up in the sky Friday. You are loved so much my angel. The stars were so bright Friday I knew you were up their having a great time singing and playing. Saying "hey everybody look at all my friends". I’m sure God must have gotten you a very cool guitar to play in heaven as loud as you want. We love you honey, I sure you have been playing with your cousin Gary up in heaven I had a lot of fun with Gary back in queens NY also. I can’t wait until I can hold you in my arms again. To my bestest best friend Nicholas. Mommy, Daddy and your brother Christian love you very much. Mimi, Xena and Powder love you too honey.


God Bless
Nicholas Dad

Saturday, May 8, 2004 10:10 AM CDT

Sorry for the delay in updating Nicholas’ website. This past weekend there were two successful charity events. On Saturday, May 1st there was the Rainbow of Heroes Walk. At first I was a little apprehensive about going to the walk. The idea of seeing all of his Doctor’s and nurses…I just wasn’t ready for that. When we entered into the building the children were singing, “You are my sunshine”. I immediately started crying. This was our song; we sang it to Nicholas all the time. Then I starting thinking maybe this was his way of telling me I belonged here. Jose made a poster with some of Nicholas’ pictures on it and put up some of his favorite things. They gave us some balloons and we put Nicholas’ name on it. Despite the rain everyone walked around the track. At one point during the walk Jose’s balloon string was cut and the balloon floated up towards the sky. We joked that Nicholas wanted to have this balloon so he took it. After the walk the events coordinator asked for the patients and siblings to go up on stage. We put Christian up there and they played some music for the children. Christian looked a little scared at first until he heard the music. After that someone sang the song “somewhere over the rainbow”. He sang it so beautifully it was just he and his guitar, very emotional. There was a moment of silence for remembrance or reflect. Then we all our balloons go. It was so beautiful and so touching. This event raised over 64 thousand dollars. We were so glad to hear this.

On Sunday, May 2nd there was the Ride For Kids event. Man did it rain so much. This was the first time that the ride was being held in Cary. Maxine and Rod stopped by prior to the ride to give me my Ride for Kids shirt. Maxine stitched on the shirt Nicholas’ name and his dates. It was so beautiful. I am so proud to have this shirt and to be participating in this event. Thanks to Cherry and Cindy I was able to participate in the ride. Cherry is a very nice woman who sought out Cindy and asked her if I could ride on the back of her bike. Cindy was so nice and happily agreed to it. I was on the 2nd bike on the ride and the first. We talked about Nicholas and she met Jose and Christian. She has this awesome trike. It’s so cool. I told her I would like one, I even mentioned this to Jose (who knows maybe someday). The minute we got on the bike the rain started and didn’t stop until the end of the ride. We had police escort throughout the entire ride…Thank you Wake County and Cary police. As I mentioned Cindy and I talked about Nicholas and all that he went thru. This was Cindy and her husband’s first ride and how proud she was to be participating in this event.

I wanted once more to express my sincerest thanks to everyone in the Georgetown community for their continued support to our family. Combined with your donations Ride for Kids raised over 24 thousand dollars.

Next Friday, May 14th will be Nicholas’ 6th birthday. On the evening of May 14th if possible could you please light a candle for him? This way he could see at night all those who are thinking about him. This has been and will continue to be a very emotional month for us. Our neighbors have planned a tree planting ceremony for his birthday. Please continue to think of our family during this time.

Also please continue to keep Christopher Caban in your thoughts.

Thank you,
Helene

Wednesday, April 28, 2004 4:34 AM CDT

Rainbow of Heroes Walk (Duke Hospital) this coming Saturday May 1st

http://cancer.duke.edu/PBMT/fundraising/rainbow.asp

Helene and I would like to thank our neighbor Maureen Robinson and her family for going around the neighborhood Saturday to raise money for “Rides for kids” (Pediatric Brain Tumor Foundation) in Nicholas memory. We would also like to personally thank everyone from the bottom of our hearts in the Georgetown community who gave their donations to Ride 4 kids in Nicholas' memory.

We would also like to thank the Georgetown Gazette for placing an article about the “Rides for kids” fund drive. You have all been so supportive to us.

I have to say when Maureen and her son Jacob came by last Saturday with their collection I was over whelmed. When she left and once I settled Christian down all I could do was cry. Thank you everyone from the bottom of our hearts.

There are a lot of upcoming events that are important for cancer awareness and specifically brain tumor awareness. Please keep a watch and help support these charities:

1. Rainbow of Heroes Walk (Duke Hospital) -Saturday, May 1, 2004
2. Rid For Kids – Sunday, May 2, 2004
3. Jimmy V Celebrity Gold Classis – Sunday, August 29, 2004

This is the first time that Ride For Kids is being held in RTP so please come and support us. If you aren’t familiar with RFK check out their site: www.rideforkids.org


Please continue to think of all of the children battling cancer and donate. Make your contributions to Make A Wish, Give Kids The World, Ride For Kids and the Jimmy V foundation. If you can't help money wise, donate your time. Help to put smiles on those wonderful faces and give their families great memories.

With Love,
Helene and Jose

Also, we have a cousin who suffers from seizures. Doctors have not found the cause for his seizures yet. Please keep Christopher Caban in your thoughts.

Friday, April 16, 2004 1:02 PM CDT

Hello everyone. Thank you all for your continued support for our family. It means so much to us that you still visit and check on how we are doing.

We took Christian to the Annual Easter egg hunt held in our town. This was Nicholas’ favorite. He loved to run around the field and pick up the eggs. Jose and I talked about how nice it would have been to see the two boys participating in the hunt. Nicholas was such a great big brother to Christian. I know that Christian misses him. He goes in Nicholas’ room everyday. I tell Christian how special he is because he has his own special angel looking out for him. We look for the brightest star and know that it’s Nicholas looking down at us.

There are a lot of upcoming events that are important for cancer awareness and specifically brain tumor awareness. Please keep a watch and help support these charities:

1. Rainbow of Heroes Walk (Duke Hospital) - Saturday, May 1, 2004
2. Rid For Kids – Sunday, May 2, 2004
3. Jimmy V Celebrity Gold Classis – Sunday, August 29, 2004

This is the first time that Ride For Kids is being held in RTP so please come and support us. If you aren’t familiar with RFK check out their site: www.rideforkids.org


Please continue to think of all of the children battling cancer and donate. Make your contributions to Make A Wish, Give Kids The World, Ride For Kids and the Jimmy V foundation. If you can't help money wise, donate your time. Help to put smiles on those wonderful faces and give their families great memories.

With Love,
Helene

Friday, April 9, 2004 1:07 AM CDT

It is with great sadness in our hearts I tell you of Jake Austin Griffin who became an Angel Thursday April 8, 2004 at home at 6:04 a.m
Jake is one of our hero’s like Nicholas he was also 5 ½ years old. Please say a pray for Jake’s parents Susan and Mark Griffin.
Please visit Big Jake's web site.
http://www.caringbridge.org/page/jakegriffin
Jake is Nicholas and our buddy. I see Nicholas and Jake in heaven playing together and laughing.

As my sweet Nicholas would pray. “Thank you God for the birds that sing, Thank you God for everything Amen.

May God have mercy on all the children battling cancer.

With Much Love
Nicholas' Dad

Saturday, April 3, 2004 11:16 AM CST

Hello All: Sorry it's been a while since we last updated the website. Things are OK for all of us. We still cry at least 5 times a day. We miss Nicholas constantly. All I think about are some of the phrases that he would say. "This isn't fair", "I love you to the moon and back", "La Bella Luna", etc. and the reality that I won't hear those from him anymore hurts immensely. And then again I have to smile at how wonderful it was to hear him again in my head. To remember how his face looked when he said these words. So precious.

Anyhow; Christian and I just got back from Orlando Fl. My sister moved there so we went to visit. I was so afraid to leave the house. I felt that if I left I was leaving Nicholas behind. Jose assured me that this was not the case. That Nicholas would be with me where ever I went. The minute we arrived in Fl. I cried. This is where we last went as a family on his Make-A-Wish to Disneyworld. I was a wreck that night. I called Jose and he and my sister Yvette calmed me down. So many memories and that was just the airport. We went to the Magic Kingdom and it felt like Nicholas was there with us. All sorts of memories were flooding in. How he danced to the music on Main St. His pictures with all the characters, how he loved the rides. I told my family this was an emotional day filled with such wonderful memories...a good day.

We also went to Give Kids The World. They were so nice to us. They asked us to stay for dinner and enjoy all the events that they were hosting. Marie found Nicholas' star that they glued to the ceiling. We even got to ride the carousel (which was Nicholas' favorite). Again tears but happy ones.

Finally Epcot. I knew this was going to be really hard. We took pictures for Disney's legacy wall. For those not familiar with this it's great. Epcot has several walls and you get to put whatever you want on it. Some have sayings, other have pictures. We choose pictures. So we found ours. It's on the first stone right in the front. There will forever be a photo of my son at Epcot our first family photo. I cried the minute I saw it, Yvette bent down and kissed the picture, and Marie took pictures of the wall. I am so glad that we did this.

Despite my feeling afraid of loosing Nicholas when ever I left the house. I realized he would always be with me.

Please continue to think of all of the children battling this dreadful cancer and donate. Make your contributions to Make A Wish, Give Kids The World, Ride For Kids. If you can't help money wise, donate your time. Help to put smiles on those wonderful faces and give their families great memories.

With Love
Helene

Sunday, March 7, 2004 7:02 PM CST

Today we would like to give a very special thank you to Miche René Federico (Struab) and her entire Yoga class. On Sundays all the proceeds go to a foundation this Sunday it is going to Make-a-wish in memory of Nicholas. Helene attended and our neighbor Maureen too. Helene said it was a lot of fun. God bless all of you guys.
Please check out her web site http://www.namasteyogacenternc.com/
Miche’s Yoga class is called Namasté Yoga Center.

Dear Nicholas,
We love you so much and we miss that we cannot hold you in our arms and have our family group hugs. I’m sure your having a great time singing and dancing and playing your guitar. Sing and play your guitar loud sweetheart so we can hear you from heaven. Christian is watching “The Wiggles, Dragon Tales, and Tweenies. These are his favorites just like you.
We are sending you a bunch of hugs and kisses with every teardrop. I say your pray everyday just like you did. “ Thank you God for the birds that sing and thank you God for everything.
We love you baby. See you in heaven.


Everyone Do not forget the event coming up in our area given by
The Pediatric Brain Tumor Foundation called
***** RIDE FOR KIDES.*****
On MAY 2nd come join thousands of your motorcyclist friends and help us help the medical research community find the cause and the cure of childhood brain tumors. Nicholas was suppose to ride in this event. We are still going in his honor. If you have a motorcyle or know someone who does join in on the ride. For more information come to
http://www.ride4kids.org

Please continue to donate and help a child.

Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746

For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608

Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.
Helene, Jose and Christian

Thursday, March 4, 2004 2:33 AM CST

Thank you everyone for all your support and prayers. It has been very emotional for us not having our Angel Nicholas here with us. We try and start projects on Nicholas behalf but things get too emotional for us. Christian is doing well. It has been very difficult taking Christian to all the kiddy places. We use to take Nicholas to all of them.
I find myself eating Nicholas Favorite foods, watching his TV shows and looking at pictures of him. I try to watch some of his videos but I just brake down big time.
We have his two guitars on his bed with his polar bear named Powder. I often just sit in his room embracing his guitar. I don’t play it I just embrace it. I often go through his closet. I can remember Nicholas wearing each and every shirt, pants or hat.
We find one of our Dogs Mimi in his room all the time now. I look back before our Angel Nicholas was diagnosed and I cannot remember a day when I cried tears. Sure I remember sad times but never tears. Today, I cannot remember a day that goes by that I do not shed tears. If each of my tear drops were a step to heaven I would have reached it by now.

I would like to let you all know of an event coming up in our area given by
The Pediatric Brain Tumor Foundation called
***** RIDE FOR KIDES.*****
On May 1st come join thousands of your motorcyclist friends and help us help the medical research community find the cause and the cure of childhood brain tumors. Nicholas was suppose to ride in this event. We are still going in his honor. If you have a motorcyle or know someone who does join in on the ride. For more information come to
http://www.ride4kids.org

Please continue to pray for us and the many children who are still battling for their lives.

Thank you all for donations in memory of Nicholas. It seems we get a card from one of the foundations just about every other day letting us know who donated in Nicholas memory.

God Bless Nicholas Dad

P.S.
Hi Nicholas, I wanted to let you know how much we miss you and love you. I know your having a great time in heaven. I’m sure Jesus gave you a brand new guitar and many more wonderful instruments to play. Have you played any of the Angels Trumpets yet? Are you telling everyone about Bye Bye Birdie and the Wiggles?
Nicholas, Mommy and daddy loves you and we’re giving you hugs and kisses in our hearts. We all love you to the Moon and back five times.

Please continue to donate and help a child.

Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.
Helene, Jose and Christian

Tuesday, February 10, 2004 11:20 AM CST

Thank you all for your continued thoughts and prayers for our family. The donations that you have so willingly given to the organizations we’ve mentioned have been extremely welcomed.

We are coping as best we can. Some days are better than others. There are still times when I can picture him with us or hear his laugh. Christian is doing OK too. I can tell that he misses Nicholas. He still goes in his room and puts on the TV. At first I didn’t want him in Nicholas’ room, but then I had to realize that Christian was grieving too. I know that he is only 18 months but he truly loved his older brother. They were just starting to play together when Nicholas really started not to feel well. Christian will look at our family pictures and point out Nicholas first and then himself.

As for Jose and I. Jose went right back to work after the services. This was a good thing and a bad thing. It gave him something to do…especially since his birthday was the week after all of the memorial services we had for Nicholas. However; it was hard on him if he wanted to grieve he couldn’t express this at work.

As for me, I’ve found myself at times doing nothing to pass the time. I know this isn’t healthy but there are times when all I want to do is stay in bed. I am grateful that Christian is around to help me out with those moods. I’ve tired to make it a point to take him out to play. We go to the mall so that he can play with other kids. This is good and bad because all of the play areas are where we’ve taken Nicholas.

We did however make it a point to attend a meeting for the pediatric brain tumor foundation (PBTF). This will be the first year that Ride For Kids is having a motorcycle ride in Cary with all the proceeds going to PBTF. This ride is scheduled for 5/2/04. Please check out their site and help if you can. www.rideforkids.org

Thank you all for your continued thoughts and prayers for our family. The donations that you have so willingly given to the organizations we’ve mentioned have been extremely welcomed. Please continue to donate and help a child.

Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.
Helene, Jose and Christian

Wednesday, January 28, 2004 2:57 PM CST

There were so many people who came to show how much Nicholas had affected their lives. At one point Jose and I said to each other. Nicholas would have loved this. He would have said, "Look at all of my new friends". The people of Central Islip are truly wonderful. I am glad to call it home.

Mike Zabrocki performed the musical arrangements. He played all of Nicholas' favorites. Especially, "Your Heart Will Lead You Home". If you have a chance please visit his site. It's listed at the bottom. He holds a special place in our hearts and is a wonderful musician. Father Jim said a prayer for Nicholas and our family. He was so nice to us. He is new to the parish but I think he will do great things for Central Islip. Also a very good friend of the family Father Tom spoke about Nicholas and our family. He too said such wonderful things about Nicholas. There were beautiful pictures of Nicholas at the front of the alter. He had such a wonderful smile in all of the photos.

After the mass my parents had a gathering at their house. It was great to have This past weekend was Nicholas' ceremony held in Central Islip. It was absolutely beautiful everyone there and talk about Nicholas or catch up on each other’s lives. Thanks Mom, Dad, Yvette and Heather.

I wanted to let you know how special my sister is. Not only because she's my sister, but because of what she's done. Since Nicholas' diagnosis she had joined Make-A-Wish and has encouraged those around her to make contributions. Yesterday she donated her platelets. This is truly special to me since this will truly save someone life/lives. Thank You.

Again thank you to all of you for your donations. We have received letters from Make-A-Wish and the Children’s Home Society. This means so much to us. If you are still interested please see below.

Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/


Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Helene

Tuesday, January 20, 2004 4:44 PM CST

I would like to thank my Yoga instructor Miche for her kindness and generosity. She will having a special class in Nicholas' honor with the proceeds going to Make A Wish. Please see her news letter.

on Sunday, March 7 there will be a special donation class for a student who just lost her 5 year old son to a brain tumor on December 26. She has asked for donations to go to the Make A Wish Foundation, for they made her son Nicholas's wish come true, which brought much joy to his precious little life. This class will take place at the 4pm time slot. Due to the special nature of the class, pass cards are not taken. We simply ask for whatever you can offer: money, prayers, positive energy, or just support by being there in memory of Nicholas. Here is the website for Miche: www.NamasteYogaCenter.com


Also please don't forget the following information too:

We will be having another church service in New York Long Island for Nicholas. This is our home town. It will be held January 24,2004 at 11am
SAINT JOHN OF GOD ROMAN CATHOLIC CHURCH,
631-234-6535
84 CARLETON AVENUE
CENTRAL ISLIP NY 11722

We are very grateful for all the emails and donations that everyone has done. I understand people are not sure were to send the donations to. Many are just mailing it to us and we are sending them to the organization you wish. Or you can mail them to the following addresses:

For Make-a-Wish.
You can go to http://www.wish.org/home/giving-shopping/giving_honor.htm

Or mail it to:
Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/
http://www.caringbridge.org/va/jacob

Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Monday, January 12, 2004 5:47 AM CST

We will be having another church service in New York Long Island for Nicholas. This is Helene and I home town where we both went to high school.
It will be held January 24,2004 at 11am
SAINT JOHN OF GOD ROMAN CATHOLIC CHURCH,
631-234-6535
84 CARLETON AVENUE
CENTRAL ISLIP NY 11722

We are very grateful for all the emails and donations that everyone has done. I understand people are not sure were to send the donations to. Many are just mailing it to us and we are sending them to the organization you wish. Or you can mail them to the following addresses:

For Make-a-Wish.
You can go to http://www.wish.org/home/giving-shopping/giving_honor.htm

Or mail it to:
Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/
http://www.caringbridge.org/va/jacob

Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Tuesday, January 6, 2004 10:56 AM CST

We are very grateful for all the emails and donations that everyone has done. I understand people are not sure were to send the donations to. Many are just mailing it to us and we are sending them to the organization you wish. Or you can mail them to the following addresses:

For Make-a-Wish.
You can go to http://www.wish.org/home/giving-shopping/giving_honor.htm

Or mail it to:
Make a Wish foundation of America
Gift Processing Center
P.O Box 29119. Phoenix, AZ 85038-9119

Our local chapter for Make A Wish:
3803B Computer Drive, Suite 108
Raleigh, NC 27609.


You can have your gift sent to Nicholas’ local chapter or have your gift in Nicholas’s memory sent to your local chapter. Just include your ZIP code or ours 27513.

For “Give Kids the World”
Donate online: http://www.gktw.org/docs/donate

Or mail to:
Give Kids The World
210 South Bass Road
Kissimmee, FL 34746


For “The Children’s Home Society of North Carolina”.
Mail to:
Children's Home Society of NC
PO Box 14608
Greensboro, NC 27415-4608


Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/
http://www.caringbridge.org/va/jacob

Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Tuesday, December 30, 2003 8:59 PM CST

Today was the service for Nicholas. It was a beautiful ceremony. Everyone spoke such kinds words about Nicholas and how he touched their hearts.

We were very glad and our family from out of state came to be with us to celebrate Nicholas' life. We had family come from New York, Connecticut, Florida, Arizona, Pennsylvania, and Puerto Rico.

We all rejoiced about his life and mourned the loss of his life. No words can express the emptiness we feel. Our house is a little quieter without him.

The priest said such wonderful things about Nicholas and the choir was beautiful. My niece Heather and cousin Andrew said such wonderful things about Nicholas and how his life affected them. His caretakers Arit and Stephanie also said such kind words of their affection for Nicholas. Hilda and Uncle Albert thank you for reading at the service. It meant so much to us.

There will always be a hole in my heart for the loss of my baby, but the memories I have of Nicholas will help to ease some of my pain.

If you would like to make a donation in Nicholas’ honor they can be made to: Make-A-Wish, Give Kids The World, Caringbridge and The Children’s Home Society of North Carolina.

Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/
http://www.caringbridge.org/va/jacob

Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Tuesday, December 26, 2003 4;05 PM CST

It saddens me to write this. Our son Nicholas died this morning on December 26, 2003 at 4:25am. Those who loved him and those he loved surrounded him. He will surely be missed.

Services will be held on Monday, December 29th, from 6-8 pm at Brown-Wynn Funeral Home located at 200 S. E. Maynard Road and church services will be conducted on Tuesday, December 30th at 11 am at St. Michaels, located on High House Road in Cary.

In lieu of flowers, donations can be made to: Make-A-Wish, Give Kids The World, Caringbridge and The Children’s Home Society of North Carolina.

Thank you all for your continued support and kind messages throughout this entire time

God Bless you all.

Helene, Jose, and Christian

PS: Please visit other caringbridge children we have grown to love: http://www.caringbridge.org/tx/cheyenne5/
http://www.caringbridge.org/va/jacob/
http://www.caringbridge.org/ny/christopher/
http://www.caringbridge.org/page/jakegriffin/
http://www.caringbridge.org/fl/chriskirby/
http://www.caringbridge.org/va/jacob

Please forgive us their are so many more children we have not mentioned but not forgotten. We love you all.

Wednesday, December 24, 2003 5:15 PM CST

Nicholas had two other good days. Yesterday was such a great sunny day That Helene, Grandparents and the boys went to the park. Nicholas was in a Jogging stroller all wrap up in a blanket. He also ate some grits yesterday and today. We are very concerned because he has lost a lot of weight and is very weak and fragile. He seems to have most of his energy in the morning by midday is out. He has been hanging out downstairs in the living room for the past 2 days and sits up with the pillows propped but by midday he wants to lay completely flat. We are still hopeful by the grace of God that protocel 50 will work for Nicholas this is day 12 for Nicholas taking Protocel 50. It is still too soon to know if protocel is working.

Christmas eve, I pray everyone has a safe and peaceful Holiday. I pray for Nicholas and all the children, sick and healthily may tomorrow bring some joy into their lives. I pray Christmas day gives us all strength to continue. Just one day at a time.
Thank you, all so much for Keeping Nicholas and our family in your prayers and thoughts. Also I would like to thank you all for visiting Nicholas web site and also signing his guess book.

May the Lord bless you all.

Nicholas Dad

Monday, December 22, 2003 11:20 AM CST

Nicholas is doing pretty well today so far. Yesterday he lost all ability to move his left arm. And his left eye was almost closed as well as his left side of his face. We keep checking to see if he is in any pain. Thank goodness he is not.

Early this morning Nicholas surprised us. He said look daddy and lifted both arms over his head to rest them on his pillow. He has barely any strength in his left arm but today he can move it again. His left eye has opened again and his eyes are not as crossed as they were. I pray this may be the Protocel 50 working but it is too early to tell.

Nicholas had another early Christmas. Our neighbor brought him a cool video and a soccer beanbag. I laid him on the beanbag and he really enjoyed it. Christian was also having fun on the beanbag. Thank you so much Miss Peggy and family. Nicholas also received two stars registered in his name. He really got a kick to have two stars named after him. He asked how about the moon. I told him sure no problem. Thank you miss Maureen and family for a great star and Titi Marie and Uncle Albert for the other great star. Nicholas' favorite number is 5 so he was really happy when he found out he now has 2 stars with his name on them. I am hoping we can get the rest of the 3 to give him his 5 stars. We always tell eachother "I love you to the moon and back". This we do 5 times as we make a circle on each other...kinda like circling the moon. Just a little thing mom's do to their children.

Please continue to pray for Nicholas and the other children.
God bless

Nicholas Parents.

Saturday, December 20, 2003 6:50 PM CST

Thank you Lord for these good days and help with the bad ones. Amen.
Today Nicholas slepted just about the entire day. Poor guy is so weak. I am thankful we can still communicate with Nicholas. He tells us if there is anything wrong When I rest by his side I just lay there watching him. I see my angel so peacefully sleeping.

Nicholas Aunt Marie, and cousins Melissa and Alyisa came over today to have an early Christmas. Unfortunately Nicholas was too tired to open his gift.
We are still hopeful that Protocel 50 will help Nicholas.

Please continue to pray for Nicholas and the other children.
God bless

Nicholas Dad

Saturday, December 20, 2003 1:02 AM CST

Nicholas was very tired today. Still in bed but was able to take his meds and protein liquids very well. We are getting nervous for Nicholas he has lost so much wait and is always complaining he is cold so he bundle him up nice and warm. Nicholas did not go anywhere today and was even too tired to see the Snow blizzard we had for about an hour. Or should I say snow drizzly. I pray god blesses Nicholas with a great day Saturday.

Thank you all for the keeping Nicholas and the other children in your thoughts and prayers. Please continue to prayers for our little ones.

God Bless and stay safe.
Check out the new picture

Semper Fidelis

Nicholas Dad

Saturday, December 20, 2003 1:02 AM CST

Nicholas was very tired today. Still in bed but was able to take his meds and protein liquids very well. We are getting nervous for Nicholas he has lost so much wait and is always complaining he is cold so he bundle him up nice and warm. Nicholas did not go anywhere today and was even too tired to see the Snow blizzard we had for about an hour. Or should I say snow drizzly. I pray god blesses Nicholas with a great day Saturday.

Thank you all for the keeping Nicholas and the other children in your thoughts and prayers. Please continue to prayers for our little ones.

God Bless and stay safe.
Check out the new picture

Semper Fideilis

Nicholas Dad

Thursday, December 18, 2003 7:24 PM CST

YES, YES, YES
Nicholas had a pretty good day overall.
THANK YOU LORD for these precious moments. First thing this morning Nicholas asks for French toast sticks. He also wanted to go with me to get them. As we were preparing to go Grandma needed to take her Meds. Nicholas as always wanted to help. Nicholas cleaned the area for Grandma so she could take her needle. Then off we went. On the way back we ran into our good neighbor Miss Maureen. Thank you for the wonderful treats for Nicholas.

Nicholas had a very small seizure this morning. Thank goodness it took very little meds to prevent anymore. He ate very little of his French toast sticks but he ate which is a good thing. We also gave him his protein drink. I was afraid since he was out sleeping most of the day we were unable to give him much liquids. He really likes his cherry Icies. He only complains it is too cold. Nicholas wanted me to stay with and cuddle in bed but later kicked me out for snoring. Sorry, Nicholas.
Nicholas stayed most of the day in his room watching Bye Bye Birdie and his favorite cartoons. I told him he might break the record for watching Bye Bye Birdie. He watches the whole movie about 3 times an average day and certain scenes about 15 to 30 times a day. (You do the math.
He took a very,very long bath which he said he really enjoyed.
We were giving a painting of Nicholas with the theme of the Lion King in the background. It is such a wonderful picture. Nicholas really loves it.
Grandpa brought it all the way from New York. I would like to personal thank the people who drew the picture it is so wonderful. Sorry I don’t have your names yet but I will.
They are from our hometown and are attending our old high school.
CENTRAL ISLIP SENIOR HIGH SCHOOL!!! GO Musketeers!!
I would also like to thank Susan for the poem that she sent us “Footprints in the sand”.
During this time when I read this poem I really thought hard about that poem.
After much thought and praying I finally thanked God for theses days he is carrying our whole entire family. I would hate to see all our footsteps in the sand in these times.
Thank you so much for everyone’s prayers and thoughtful gifts.
I ask The Lord to please also bless this Protocel 50 to help our little one and the many others using the alternative medicine.

Sending much love and prayers

Nicholas Dad.

Thursday, December 18, 2003 7:24 PM CST

Nicholas had a pretty good day overall. THANK YOU LORD for these precious moments. First thing this morning Nicholas asks for French toast sticks.
He also wanted to go with me to get them. As we were preparing to go Grandma needed to take her Meds. Nicholas as always wanted to help. Nicholas cleaned the area for Grandma so she could take her needle. Then off we went. On the way back we ran into our good neighbor Miss Maureen. Thank you for the wonderful treats for Nicholas.

Nicholas had a very small seizure this morning. Thank goodness it took very little meds to prevent anymore. He ate very little of his French toast sticks but he ate which is a good thing. We also gave him his protein drink. I was afraid since he was out sleeping most of the day we were unable to give him much liquids. He really likes his cherry Icies. He only complains it is too cold. Nicholas wanted me to stay with and cuddle in bed but later kicked me out for snoring. Sorry, Nicholas.
Nicholas stayed most of the day in his room watching Bye Bye Birdieadn his favorite cartoons. I told him he might break the record for watching Bye Bye Birdie. He watches the whole movie about 3 times an average day and certain scenes about 15 to 30 times a day. (You do the math)
We were giving a painting of Nicholas with the theme of the Lion King in the background. It is such a wonderful picture. Nicholas really loves it.
Grandpa brought it all the way from New York. I would like to personal thank the people who drew the picture it is so wonderful. Sorry I don’t have your names yet but I will.
They are from our hometown and are attending our old high school.
CENTRAL ISLIP SENIOR HIGH SCHOOL!!! GO Musketeers!!
I would also like to thank Susan for the poem that she sent us “Footprints in the sand”.
During this time when I read this poem I really thought hard about that poem.
After much thought and praying I finally thanked God for theses days he is carrying our whole entire family. I would hate to see all our footsteps in the sand in these times.
Thank you so much for everyone’s prayers and thoughtful gifts.
I ask The Lord to please also bless this Protocel 50 to help our little one and the many others using the alternative medicine.

Sending much love and prayers

Nicholas Dad.

Wednesday, December 17, 2003 12:08 AM CST

TIME, TIME, TIME, I never realized how precious time really is.
Nicholas had another good day yesterday. His breathing was normal. We did not have to give him any meds for breathing. He even ate 2 cherry icy cups that Aunt Angie brought for him; She actually brought tons of the stuff for him. Thank you Aunt Angie.
This morning it started out well for Nicholas but he went into 4 mild seizures. He is now medicated and sleeping it off.
We were having so much trouble with his Dilantin seizure meds the Doc decided to up his Keppra seizure meds instead. We are still praying that Protocel 50 will work for Nicholas.
Thank you all for Keeping Nicholas and our family in your thoughts and prayers.

Lord I pray for another wonderful day for Nicholas and all the caringbridge children.

God Bless

Nicholas Dad.

Monday, December 15, 2003 6:45 PM CST

Nicholas had another good day today. He woke up early and we brought him downstairs he stayed on the coach all day rolled up in his favorite blanket. He took his meds and drank his protein drink very well. (Still through a syringe)
He was awake most of the day and only took a big 3-hour nap. The rest of the day he was watching TV and we would read to him. He is going to bed early tonight.
To us Nicholas actually looks his best today the news we got from the Hospice nurse was disturbing. She said if he does not want to eat do not force him. She said he has become very tired and not wanting to eat is because of the tumor growth and it is getting to that time. Helene did not take this news very well. I told her when the nurse left I will continue to feed Nicholas protein drink. I believe that the protocol 50
can do it. (It has too) I just pray to our almighty God he grant Nicholas enough time for the protocol to do its job. The Nurse notices Nicholas taking a couple of deep breath and said he is at the beginning stages of having difficulty breathing. She gave us some meds for his breathing.
TIME, TIME, Please pray for time for Nicholas. He is still not in any pain, which I am very thankful for.

Please keep praying for Nicholas as well as the other children battling for their lives.

God bless

Nicholas Dad

Sunday, December 14, 2003 8:23 PM CST

Nicholas has had two good days. He is still in bed and sleeps a lot but is sleeping less and watching more TV, playing card games and wanting us to tell him stories and read books.
Nicholas has always like doing things on his own. Saturday he has been feeding himself with the syringe and today he had some soup. He also sat up in bed to watch TV for a while.
Saturday, Nicholas over heard his Mommy say they were going to the mall and wanted to go, so we all packed up and went to the mall. We have one of those double strollers so off we went. Even thou Nicholas never walked around he told me he was happy he got to go to the mall. Nicholas also saw the rides at the mall and when Heather and Jackie went to go take him he had the biggest smile on his face. Unfortunately he only went on a few rides because he wasn’t felling so good. We then went to a Christmas light show, which was a drive through. I was afraid this may have been too much for Nicholas.
But about 3’ o’clock this morning he wanted me to read him some stories, how could I say no. Well his favorite is the three little pigs. I started to mix the 3 little pigs story all up because I was tired but he caught on and helped me set the story straight.
I thank the Lord everyday for Nicholas and thank him for these two good days may he have many more.
I would like to thank all the caringbridge sites for telling their stories it really helps other families. We had Nicholas on an Alternative treatment called Protocel 23 unfortunately it has not worked for him. Recently, I have read from 2 of our caringbridge children how they first started on Protecel 50 and did great but later switched to Protocel 23 and had good results until recently. They both switched back to Protocel 50. Well, to say the least
This is day 2 for Nicholas on Protocel 50. God please let this work. Nicholas and I have been writing a song together and I would like to finish it with him. They say a country song is not a country song with out trains, Momma and getting drunk. Don’t quote me.
Nicholas’ song is about “The Moon and back”, “5” “best friends” and “M, M’s” and “always searching for rainbows”
Thank you for all your kind signings, prayers thoughfullness.

God Bless

Nicholas Dad

Friday, December 12, 2003 9:25 PM CST

The news From Memorial Hospital finally came in late today. Nicholas does not qualify.
Today has been a long and quiet day. Nicholas is still mostly sleeping. He is in no pain which I thank the Lord for that.
He is eating more liquid protein and may eat one or 2 spoonfuls of food. He has been doing pretty good eating applesauce. Heather and Jackie are making a gingerbread house in hopes it will cheer up Nicholas.
I was hoping he would at least watch them making it but be just said I’m tired I really tired.
I would like to personal thank all the wonderful people writing, and praying for Nicholas.
I would also like to thank our caringbridge families who have added Nicholas to their site to bring people to Nicholas site and to pray for him. Bless you all.

I will say Nicholas has not lost his playfulness. He grabs my glasses from me and said swiper did it.
He was playing from the cartoon show Dora the explorer.
The Priest came by today to give Nicholas the Sacrament of Anointing. This was really hard for us.

Lord I ask for your ever loving mercy in our time of need and the other children who are also suffering. Amen.

Nicholas Dad.

Friday, December 12, 2003 2:26 PM CST

Nicholas is doing pretty well. He is in no pain and continues to stay in bed sleeping and watching TV. He has very little energy.
We still have not heard anything from Memorial Hospital in Chicago. I have called but everyone is either on vacation or doing rounds.
All we can do now is sit wait and pray.

Nicholas Grandma, cousin Heather, and Jackie are here spending time with Nicholas and Christian which is helping him out alot.

Nicholas Dad

Thursday, December 11, 2003 5:35 AM CST

Nicholas spent the day Wednesday in bed sleeping and watching TV.
He was able to take in more protein shake and eat very little applesauce and macaroni and cheese today. It just tears me apart to see him this way.
Nicholas is not in any pain thank God.
Sorry I do not have it in my heart to say much today.
Please, Please God let tomorrow be even better day for Nicholas, May he continue to grow stronger again and we here good news from Memorial Hospital in Chicago.
We found a place in California Nicholas may qualify for a treatment their.
Lord please let Nicholas qualify for one of these miracles.
Lord bless all the people praying for Nicholas and all the caring bridge families.

Nicholas Dad

Tuesday, December 9, 2003 6:50 PM CST

Nicholas has been resting all day again today. Hospice Nurse came over today and was unable to draw any blood. They will try again tomorrow. Even though Nicholas rested just about the entire day he looks better today. He has not been eating so I have been trying to feed protein shake through a syringe about 1oz every ½ hour to see if he can keep it down. To me Nicholas day has improved from yesterday. I was able to give him a whole can of protein drink with in 2 hours by the mid-day and he ate some of his famous grits. His spunk is coming back. I was trying to feed him some drink out of a syringe when he grab the syringe and threw it across his room. A funny thing I was so happy to see him get angry. He showed me he still has a lot of fight in him. This afternoon Christian grabs Nicholas stuffed rabbit and threw it. Nicholas got mad again. This time he got up and walked to the rabbit then went to his grandmother's room to take a nap with her. Lord thank you for this day for Nicholas and I hope tomorrorrw will be better then today.
As always I ask you to continue to pray for Nicholas and all the caring bridge children going threw this ordeal.

May the Lord bless all of you.

Nicholas Dad

Tuesday, December 9, 2003 0:28 AM CST

Where to start? So many emotions going on right now. Time; time praying for time only had time for my boy. So many things had happen for us these last two days. We had family come over this weekend. It is very hard for us to describe, or even put into words the wonderful time we had with every one over. I had my cousins from New York, Atlanta, and Florida come visit Nicholas and us. He was so happy. He was doing really well until Saturday he is very weak now. He didn’t even have any energy to open the gifts that everyone gave him. I thought he was getting some of his energy back Sunday but he was crying to go to bed by 6:30. He does not want to eat and he started vomiting
Sunday and this morning. Hospice will be coming over for some blood test Tuesday. His swelling is completely down. I called Chicago to confirm they receive Nicholas records. We are praying and waiting for them to call us. They said we should know the latest by Friday.
Sorry, I wanted to write so much more I just can not write now.
Please pray tomorrow will be a better day for Nicholas.
Thanks for signing his guest book It raises are spirits. I find myself reading them over and over.

God bless

Nicholas dad

Friday, December 5, 2003 11:43 PM CST

PRAISE THE LORD FOR ANOTHER GREAT DAY!

Nicholas is having another wonderful day. Today we went to take Santa pictures. We had gone to one mall and the pictures came out really bad. So we went to another mall thanks to our neighbor who advised us in the first place to go.
Nicholas was looking very tired though out the day today but he would not let that stop him. After the pictures with Mr. and Mrs. Santa and explaining to Nicholas that Santa was able to beat us to the other mall because he had his sled, Nicholas wanted to play in the indoor play area. Since the play area was about empty we let Nicholas and Christian play. They had so much fun.
The best part for me was watching the boys play together and watching Nicholas use his left arm more and more.
He did a lot of sliding and climbing. Our cousins from New York came today just in time, we got home about 20 minutes after they did. The boys were very shy at first but took a liking to them very quickly. Nicholas of cause showed the movie bye bye birdie and played his guitar some. He really loved the attention he was getting today.
Yesterday was a busy day for us rushing to get Nicholas' medical records off to Chicago. This morning my wife woke me up with Nicholas in her hand. Well this made me jump up to see what was wrong. She yelled it’s gone its gone.
The swelling is completely gone. I hope this is a sign that will bye us some time for Nicholas to see if he qualifies for the treatment. As people countdown the days before Christmas. I’m counting the days before we see if he can get that treatment. Again thank you Lord for this wonderful day and thank you all for signing Nicholas guest book and sending us words of encouragement. I sometimes find myself reading them over and over again.
Please God may tomorrow be as wonderful as today. Lord I ask you to protect Nicholas and all the caringbridge kids and families.

God bless everyone

Nicholas Dad

Thursday, December 4, 2003 6:31 PM CST

WOW, what a day. Our spirits are soaring and our home was filled with so much laughter and playing.
Nicholas had a fantastic day today, or should I say we all did. His energy level was up so high today, watching him run non-stop for a long time today was wonderful. The swelling is about 95 one. The doctors had prescribed him with decadron (a steroid), which he really hasn't been on much only for a few days after surgery. We are hoping with the combination of an alternative type of treatment and the decadron will beat this cancer. We are also hoping he may get approved for the interbeam treatment in Chicago. We are hoping this decadron will by Nicholas some time to see if the alternative and other treatments work. We are always praying for a miracle. Thank you Lord for this truly blessed day. Please grant us the same tomorrow.

Please keep the other children and their families in your prayers who are battling similar issues.

Bless you all

Nicholas Dad

Tuesday, December 2, 2003 8:30 PM CST

Nicholas is having a really hard time right now. We ask that you please continue to pray for my little boy Nicholas. Nicholas had a follow up Monday to see how his shunt was doing and to have his labs taken. Unfortunately the swelling returned and his neurology Doctor made several attempts to access the shunt but he was unable to. They did a CT scan, which showed the tumor has grown considerably. Because of this they stopped the chemo. We received the worst news no one ever wants to hear. Duke has no other treatments for Nicholas they called hospice for us made Nicholas as comfortable as possible and we went home with Nicholas. Nicholas has a cold and was tired. He was still playing and mostly watching TV. For a while we were numb, in shock, and very angry. Last night right after Nicholas had his bath I drench his head, arm and back of his neck with in Holy water. I wrapped his head like we have been doing for the last couple of days. He wears his wrap on and off for a couple of hours a day. Then we started watching his cartoons. Everyone else was upstairs it was just Nicholas and I watching TV. As Nicholas was watching TV I asked him if I can pray the rosary to him. He said sure go ahead. He asked for his yellow rosary and I prayed with mine. We then finished watching TV and went upstairs after mommy told us for the tenth time that it was late and go to bed. I removed the wrap for Nicholas so he can go to bed and the swelling was about 90 percent gone. I praise the Lord for this ray of hope which he gave us again. We woke up the next morning and the swelling is still dramatically down. Hospice called said they well be here Thursday. We went back to the hospital because they had to de-access his port since hospice is coming Thursday.
Tension was really building up to say it lightly. As I watched Nicholas play with his little brother I could night believe hospice is really coming? Later that day I found a magazine that my sister-in-law Yvette left us while she was here during thanksgiving. She finds so many things about cancer for us and sends it to see if it can help Nicholas. (Thank you so much Yvette.) She had paper clipped a couple of pages which made me read the section. It was a section about brain tumors. I could not believe what I was reading maybe another chance, a ray of hope for Nicholas to see Christmas. I started to bug my wife to call while she was in the middle of a phone call and something else. (Sorry Honey) I wanted us both to be on the phone just in case. We could only leave a message. We called again and left a message.
At this time Nicholas was in the back yard playing on the swings.
Finally Memorial Hospital in Chicago called us back and took Nicholas’ information. Memorial Hospital in Chicago has a treatment for reoccurring brain tumors. It is called intrabeam system. We need to send them a bunch of medical stuff, scans reports all on Nicholas to see if he qualifies. The doctors meet every Thursday but are filled this Thursday. Please pray that this may help Nicholas. They said if we have all the information they need they would be able to discuss Nicholas options Dec 11. They will start to see if he qualifies as soon as they get his test.

I’m sorry this entry is so long. I would like to personally thank everyone for their continued prayers and support for Nicholas, and all the children and parents going through this. Please pray for strength to remain faithful, to continue to trust in the Lord and grant us peace.

I read this poem from another caringbridge site and thought it would be nice to post it.

I Pray

I pray to my Lord nightly
and here is what I say
"Please bless all the children
give them strength for another day

Father please dry all their tears
make their pain and sorrow flee
They are so young and so innocent
please hear this prayer I plea

Dear Lord through their trials
their tribulations and their fears
Please be right there beside them
hold their hands and dry their tears

Enfold them in your loving arms
and let them know they are loved
By their family here on Earth and
by You Father, in Heaven above

Please let them know I love them too
and I pray for them each night
And if I could I would take them all
and hold them long and tight

Father, ease their pain and suffering
let their road ahead be bright and clear
Please bless our Quilts Of Love children
in Angel's hearts, we hold them dear"
Copyright © October 2003, Island Princess....All Rights Reserved

Written with love and affection for the Quilts Of Love children and their families


Bless all of you

Nicholas Dad

Saturday, November 29, 2003 8:06 PM CST

What a nice Thanks giving we had. My parents, my sister Yvette and my niece Heather came to visit. It was great. Nicholas was so happy to see them. Nicholas entertained the family with his quitar playing while Christian danced to the music.

We also started a family project. We each put a handprint of our own on a large poster board and named each persons print. We are only missing my sister Marie and her family. Once it's complete I want to frame it. It's going to be a really nice piece of artwork once it's done (I took the idea from the movie Brother Bear).

My parents and Yvette went home today. Nicholas noticed that they weren't here and was upset that they had left. I told him that they will be back soon and gave him the days, but he said that was a long time to wait. Christian on the other hand has been calling for my sister Yvette all day. Heather is still visiting with us and the boys just love having her around. Nicholas and Heather were playing "knock knock"...it took Heather a while to get Nicholas' jokes. HAHAH

Tomorrow we hope to get they boys a picture with Santa.

Till then thank you all for visiting Nicholas' site and for your thoughtfullness and prayers.

Helene

Tuesday, November 25, 2003 5:41 PM CST

He's home, he's home, hurray!!!

Dr. George stopped by early this morning to let us know that Nicholas can come home. Despite the early morning OK it took them most of the day to gather all of the forms together to release him.

While we waited in the hospital a man stopped by Nicholas' room. He was entertaining all of the patients with his singing and yes playing the guitar. Well Nicholas was so excited that there was someone playing the guitar. Trey was him name and he and Nicholas jammed together. Jose and I were playing the moraccas (not sure if I spelled it right) while Heather was taking pictures. You could tell he loved it. He had his eyes closed and was strumming along all the while tapping his foot. Even Trey was impressed by Nicholas and how he was playing along with him. It was really great.

Thank you all for all of your prayers. I hope everyone has a great Thanksgiving.

Helene

Monday, November 24, 2003 6:33 PM CST

Nicholas has his surgery and it well extremely well. Dr. Georger said that the shunt was clogged with depris. It could be either from the tumor breaking up, fluid, etc. We are hopeful and see this as a positive thing.

Post surgery he looks better. Unfortunately his stomach is a little queezy so nothing is staying down. They have given him zofran and I'm hoping that this kicks in quickly. He has a little pain from the surgery and they've given him some pain meds. Despite all of this he's still happy and singing.

Just a side note while we were in the operating room waiting for the sedation to kick in. Nicholas and I were singing song's from Bye Bye Birdie and the Tigger movie. He even wanted to play out a scene from Bye Bye Birdie where Conrad gets knocked out. He's so funny. I just love Nicholas' sense of humor and energy.

Thank you all for your continued prayers and for visting our site.

Helene

Sunday, November 23, 2003 4:26 PM CST

Christian is home. Hurray!!!! He looks great and so big. Nicholas was so excited to see him. He said "the baby is home, the baby is home". I think even the dogs have missed Christian and are glad that he's home.

Nicholas and Christian have been playing together and dancing and singing together. It's great seeing them and how much they get along. Nicholas has been so excited that his grandparents, aunt and cousin were coming to visit. We had to tell him if he goes to sleep early they will be here in the morning. Well that did the trick because afterwards he went right to bed.

We had a mini Thanksgiving today. My sister Marie will be leaving with her family to celebrate with her in-laws so she stopped by today to spend it with our parents. It's really great having the whole family here. Only a couple of us were missing but it was still great.

Well tomorrow is the big day. Nicholas goes back into surgery to replace his shunt. I'm glad that we were able to have our mini celebration today.

Take care everyone and thanks for your prayers.

Helene

Thursday, November 20, 2003 8:06 PM CST

Nicholas' surgery has been scheduled for Monday. It's suppose to be an overnight stay so we are hoping that he will do fine post surgery. I hope that this time it works and the pressure is off of him. He is so strong (all of these kids are extremely strong).

Today has been a long day for Nicholas. He had speech therapy at school but unfortunately he had a seizure. His teacher wasn't sure what to do but Nicholas and I showed how we sing and count during these episodes. His school was having a book sale so he picked out 3 books. He just loves having stories read to him. One of the books is a counting book and since he loves math it was his favorite. Another book had stickers, again his favorite. Afterwards he had OT. Nicholas made a turkey drawing. It looks great we have it on the fridge. He was so proud when he was showing off his drawing.

Nicholas also got a haircut from his dad today. I know he was nervous about giving him the haircut, but he did a great job. Each time he has surgery the doctors only cut the hair of the area where they are working on so Nicholas ends up with small patches of shorter hair. He looks so grown up when his hair is cut.

Nick's friends came by to see him. Haley brought over her pet snake. I really don't like them and was pleased to know that Nick's doctor's don't want him around snakes while he's on chemo. So I had to ask her to take him back home. Jessica stayed for a while until Nicholas's teacher came.

Christian is coming home. My parents, my sister and niece want to be here for Nicholas' surgery so they have decided to leave early. I am really excited about seeing Christian. We miss him so much, our home isn't the same. We have a special thing we do called "hug time", kinda like a group hug. The boys love when we do this and it's hard to have this time with Christian not being here.

As always thank you for your thoughts and prayers.

PS: WE LOVE MRS FIELDS...YUMMY FOR MY TUMMY (Nick's phrase)

Helene

Wednesday, November 19, 2003 5:41 PM CST

We met with the neurosurgeon today and I was right they do have to replace the shunt. I've already received a call from Dr. George's PA and she's stated either next Monday or Wednesday. I pleaded with her for Monday since my parents and sister and niece, especially Christian will be coming home. I just don't want Christian's first time back home to be back in the hospital.

This whole year we have celebrated every family event in the hospital. Jose's birthday, my birthday, Nick and Christian's birthday, halloween, my mom, dad, my sisters and my niece's birthday. To be able to have some holiday celebration would be great. I know I'm complaining but just some bit of normalcy would be great.

Enough of that. Yesterday and today was great. The weather wasn't so good but we stil had fun. We went to K-mart (looking for the replacement video for Bye Bye Birdie) the one we have is starting to slow down when they sing. Well anyway on our way out we passed the Salvation Army collectors and put in a donation. The man asked if Nicholas was Ok and I told him that he has cancer. To my amazement this man got down on his knees, held Nicholas's hand and prayed for him. Right there in front of K-mart. The emotions that came from me at this point, I couldn't talk, tears were running down my face. I thanked him tremendously (Nicholas was wondering what was going on). I wiped my tears and told Nicholas that he was a very nice man with a great big heart.

I was telling my sister Yvette this story and she was amazed. I told her that this isn't the first time that this has been done to us. You hear about how rude people are and selfish. Nicholas' illness has showed be otherwise. We feel lucky to have met special people in our lives and to have a way to keep in touch with them thru this site.

Thank you all for your continued kindness and prayers.

PS: I wanted to thank Susan K. for the wonderful Mrs Fields package she sent Nicholas. He loves it. The minute we opened it up he said "Wow look at all these goodies"....we will gladly accept any further donation such as these. HAHAHA

Helene

Tuesday, November 18, 2003 5:44 PM CST

Another good day. No seizures. We had to go the Duke for his weekley check up and his doctor said his counts were great and he looked great too. We found out that his dilantin level was high (25) when optimum is between 10 and 20. So his seizures could have been due to the high level.

Today at the clinic Nicholas was entertaining the doctors and nurses with his guitar. He was singing to them and they were clapping and laughing. I was singing along with him until he told me "mom stop, you can't sing". It was funny. One of his doctors was trying to teach Nicholas "I can't get no satisfaction" by the Rolling Stones. He was really into it.

Tomorrow we have a meeting with his Neurosurgeon to see about the swelling that still isn't going down. I think that he will have to have another surgery to replace his current shunt.

I taped Nicholas last night singing to Bye Bye Birdie and to the Tigger Movie. We were watching it this afternoon and he was so into watching himself on the screen....such an actor/musician.

Christian will be coming home soon. We can't wait, Nicholas wants to have a big party when the whole family is together.

As always, thank you for your thoughts and prayers.

Helene

Saturday, November 15, 2003 7:44 PM CST

What a great day yesterday was. It was great fall weather, not to hot or to cold. The sun was out and it was a nice crisp day. We went to Pullen Park, which is where we used to take Nicholas when he was a baby. Seeing the park brought back such great memories. He was just starting to walk at that time and used to take a couple of steps and then fall. We even have a picture of him at this park hung up in our dining room. Well anyhow, we rode on the carousel and then he went on a boat ride and then a train ride around the park. He even went on the swings and down the slide a couple of times.

When we got home I had decided to color my hair. The package included some highlighting mixture so I asked if Nicholas and Stephanie wanted to paint my hair. It was really cool. Nicholas was getting into it. He thought it was like cake frosting and starting putting it all over my hair. My hair came out looking really nice. We told his dad about our day and his dad said I was very courageous to let them do my hair.

Nicholas also started his first round of chemo and handled it very well. He got up in the middle of the night complaining of a headache so we gave him some medicine and he went back to sleep.

Today has been a little difficult for him. Due to the chemo he slept late so the timing was off on his morning dose of dilantin (anti-seizure med). We immediately gave him his morning dose. Unfortunately he’s been having a lot of mini seizures all day. Each one lasts about 30 seconds. I think they annoy him more than scare him. Each time one happens he says “oh man not again” and tries to hold his hand to stop the twitching. During his seizures we sing songs or count. He likes to count in Spanish now.

Despite the seizures we went to the movies to see Brother Bear. It was pretty cool. We filled a cup up of popcorn for him so he sat there and watched the movie eating his popcorn and skittles. At one point he turned to me and said “mom I really miss Christian”. It made me feel so good. I’m really glad that they are close. I can’t wait till our whole family is together again.

As always thank you for your thoughts and prayers.
Helene

Thursday, November 13, 2003 7:45 PM CST

Nicholas had a great day today. No Seizures!
His schoolteacher Mrs. Cary also came by.
Nicholas was excited to be able to begin to open and close his hand a little. His left arm is even stronger today.
He even was walking backwards and most of all I almost had to put his guitar back in time out because he jumped off the top coach.(Geezz) Yes today we are having a great day. Thank you Jesus.
Nicholas is playing on his computer as I write this update. He likes http://www.pbskides.com

Nicholas starts Chemo tomorrow his first round will be in the evening. I hope all goes will for my little guy.

I was very happy to read that many of our caringbridge children are also having a great day.

I'm glad to read that Cheyenne had a great day yesterday. I hope today went well also.
Big Jake our little super star is doing fantastic it’s been 2 years since his dx. In the words of his Mom Yeeeeehaaaaaw!!!!!
Thank you for the continued prayers and keeping Nicholas and all these children in your prayers and thoughts.

Thank you again from the bottom of my heart.

Nicholas Dad

Wednesday, November 12, 2003 9:31 PM CST

Nicholas is still doing well. He had a yucky Monday and Tuesday only because he was stuck in the hospital
having all sorts of test done before he starts his Chemo. I do have to say when he got home he was not a happy camper. I had to put his guitar in time out. This broke my heart but we then played more games and sang songs.
His schoolteacher came by yesterday and today, which he really enjoys.

The Neurology Doctor said since Nicholas is still having problems with his shunt he would like to replace it. But because of timing we are putting it on hold. Nicholas has a shunt that is designed for medium to low pressure.
He needs to have a low-pressure shunt. The surgery will delay his chemo so we decided due to timing we will start his chemo first and if all goes well on his chemo break he may be able to get the shunt replaced.

Nicholas and I had some quite time today. We prayed for all his friends. He new his friends from across the street were sick with colds so he wanted to say a prayer to Jesus for each of them. Then he said lets pray for everyone with a booboo.
So we did. I ask him if we can say a prayer for him and he said “but daddy my booboo is all gone. See the bandage is off.” I agreed with him and ask if we could pray to Jesus for him so the booboo will not come back. So we prayed.
All in all Nicholas is having a good week. OH how can I forget! Nicholas has been having small seizures now everyday. (Which last about 15 to 20 seconds or so.) He is fully aware of them. Today he had three. On his last one he was working with his teacher when it started. We all went to him to comfort him when he closed his eyes and fell back. We all get nervous but we found out he was actually playing a joke on us, the seizure was real the falling back and closing his eyes was fake. I can’t believe he was pulling a practical joke while having a seizure.
Thats Nicholas


Nicholas
Dad

Monday, November 10, 2003 7:21 PM CST

Nicholas had such a wonderful weekend. There were no hospitals, no seizures and no ouchies.
We played, laughed and ran around the house. Nicholas even started a top secret Christmas project.
As you all know he played his guitar also.

Nicholas also went to bible study Sunday and they recruited his mom. Since she was able to stay and watch him.
They asked her to be a helper since they were missing one.

Friday he had another MRI. The results were stable (THANK YOU GOD!)
He has a check up tomorrow. They will be checking his shunt.
Today he had 2 tiny seizures on his arm. They only lasted about 15 seconds.

All in all we thank God for three great days. I have to go now Nicholas and I are watching Clifford the big red dog.

Oh I almost forgot please stop by Cheyenne's web site and read about her adventures in Give kids the world and Disney.
That is where Nicholas also went on his Make a wish adventure. It is truely a wonderful place.
http://www.caringbridge.org/tx/cheyenne5/


Nicholas Dad.

Saturday, November 8, 2003 12:02 AM CST

Sorry we have not updated for some time. It has taken us a while to build our strength up. I do want to thank all of you for stopping by everyday. Nicholas is doing well; He still continues to h