Journal History
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Friday, December 14, 2007 9:03 AM CST
Hello All:
I know it's been a while since we last updated Nicholas site. Sorry for this.
This time of year is always hard on our family, but if you can and have some time. Can you please light a candle in memory of Nicholas on the day of his passing 12/26. We feel that he will be able to see the candles and feel all of the love that we continue to hold in our hearts for him.
Nicholas my love, I love you to the moon and back, to the moon and back, to the moon and back, to the moon back, and to the moon and back.
Love
Mama, Daddy, Christian
Mimi and Xena
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 have problems with his shunt. For now the doctors want Nicholas’ head wrapped to allow the shunt to work. The Doctor wants him to always be sitting up for about a week.
We got the results from the MRI Wednesday. It was not good. It seems that tumor has spread again. He now has three tumors. Two tumors have grown back in the same cavity and one has now shown up on the brain stem. They are not sure if it has gone down to the spinal cord. His neurosurgeon said that he can get two of the three tumors but in all honesty at the rate these tumors are growing once the healing begins new tumors will already have developed.
Nick’s oncologist said he still has two different Chemo treatments that may help Nicholas with the tumors.
He will examine Nicholas Monday to make sure he is still healthy enough to start the Chemo. The doctors are still amazed at Nicholas’ zest for life. He is still playing, laughing, running, and as always playing his guitar. They see this as a good sign. Should this fail, they estimate at the rate the tumors are growing Nicholas may only have 2 to 3 months.
With the Grace of god we are still searching and praying for a miracle that will save our little boy. Please continue to pray for Nicholas and the other children battling this terrible disease.
They have been so many people to thank for their kindness and generosity and thoughtfulness. In no particular order
Our neighbors who continue to help us out. Jackie who offered to send our family to Disneyworld and Debbie for the stuffed animals and Barbara for the ice cream treat.
So far we are having a wonderful blessed day. Nicholas has been running, singing and playing all morning. The sound of his laughter fills us with strength and hope.
Today we plan on starting some Christmas gift projects.
Nicholas Dad
Sunday, November 2, 2003 8:38 PM CST
Nicholas did well Friday night all the way until morning around 9:30 am he went into another seizure.
This time he called me and said, “Oh no here it comes again”. He held his hand to try and stop the jerking in his left hand. The first one lasted about 30 seconds. Then he went into a second one, which also lasted about 30 seconds they gave him some meds, and he has been seizure free so far. Thank you Jesus.
He has had very little swelling, which comes from sleeping at night. The doctors come and literally press on the back of his head where the pump is to see if the swelling comes down. The doctors have delayed the MRI until Monday. If all looks well he can come home Monday.
Today his swelling has been gone for most of the day and they removed his head wrap. We pray it stays that way.
Nicholas has regained use of his left arm again and his thumb. He can only open and close his left hand half way.
Nicholas had a great day today. He was able to eat anything he wanted. He only asked for grits. Gee, so we gave him all the grits he wanted. He played, colored, watched TV, sang songs and of cause played his trusted guitar for some new nurses. Word has gotten around at Duke about Nichols guitar playing so people are stopping by.
We thank you Lord God for a great day today and pray for many more. We ask you protect Nicholas and the other children. Amen.
Thank you all for the continued prayers and thoughts. God bless.
Like Nicholas always says “ Thank you God for the birds that sing, and thank you God for everything Amen".
Nicholas Dad
Friday, October 31, 2003 10:44 PM CST
Nicholas is out of PICU. They had to tap the shunt (asperate the swelling) and remove the CSF that had built up. After they tapped the area they put a head wrap on him to help maintain swelling. We are hoping that this will stop any new swelling. The MRI is scheduled for tomorrow so we'll update you once we know more.
Nicholas was sad today because he couldn't go trick-or-treating. There were a lot of events going on in the hospital but since he was in the PICU area he wasn't able to particiapte in them. When he was finally moved to another room everything had finished. He wanted to wear his halloween costume so I let him put on the hat. He was supposed to be Blue from Blue's Clues. The nurses and the doctors were really nice to him. They played with him and even gave him some treats and toys.
Yesterday we noticed that his tooth is starting to come loose. The minute he realized that his tooth was loose he said "I need to put in under my pillow for the tooth fairy". It was a great moment. Our little guy is growing up.
Thank you all for taking the time to visit Nick's website and for keeping him in your prayers.
Helene
Thursday, October 30, 2003 11:39 PM CST
Nicholas started having problems with his swelling this morning. At first the swelling went down dramatically
then in the early morning it started swelling again. He went into a full-blown seizure about 8:00am. Nicholas is now in PICU. They did a CT scan and did not see any blockage but are afraid of the tumor growth. This Monster just doesn’t stop. The Doctor came in and did some kind of pump action to the Shunt to see if it will help. About 11:00pm tonight the swelling was becoming smaller. They are going to do an MRI in the morning.
Nicholas keeps amazing everyone. His Mom played his videos “Bye Bye Birdie” and Kenny Loggins from “The Tigger Movie”. You see, he wanted his guitar so we brought it in and he sat up in bed with help from Dad and started playing his guitar and singing along to the music. A crowd of nurses came by and Nicholas just ate it all up. He got a standing ovation.
Please say some extra prayers from my little guy.
Thank you, all for keeping Nicholas and our family in your thoughts and prayers.
Nicholas Dad
José
Tuesday, October 28, 2003 8:07 PM CST
Well Today Nicholas saw Doctor George. He examined Nicholas and felt because the swelling will not go down he will need to have a shunt put in. They did a CT scan and took more blood. Nicholas was not at all happy. You see he had to go for his blood check up yesterday and had to get stuck 5 times because they could not get a good line in. Well we all thought today he would not have to get any needles but unfortunately he had to get stuck again. He was not prepared for needles today. He kept asking his Mom on the way to the hospital if he would need to get any needles today.
Nicholas does pretty well when he is prepared we let him know what is going to happen and we give him a chance to express himself. Unfortunately there was no time today. But after it was all over he was all fun and games when he got home.
Nicholas will have surgery tomorrow afternoon. He will have a shunt placed in which will go from his head to his stomach. This should relieve the pressure and reduce the swelling completely. We pray this will also improve his left hand motor functions. His doctor has said that he should be in the hospital over night. We are hopeful that there won’t be any complications.
I’m not sure if I mentioned it before but he is still playing his guitar all the time. He has been watching “The Tigger movie” which has a music video of Kenny Loggins playing “Your heart will lead you home”. Well that has almost taken over the movie “Bye Bye birdie” which he sings and plays his guitar to all the time.
We are hoping he will be well enough to go trick or treating on Friday. If Nicholas can’t go Friday, I’ll personally ask some of our neighbors to have a rain date for Nicholas. Our neighbors are really wonderful and I’m sure they would not mind a rain date for Nicholas so he can go trick or treating.
Please pray that the surgery goes well and the Lord guides the Doctors hands.
Thank you, all for have Nicholas and our family in your thoughts and prayers.
Nicholas Dad
José
Sunday, October 26, 2003 7:03 PM CST
Nicholas has been having a great time these last four days. Unfortunately, his swelling has not come down.
He continues to regain use of his left hand, which I believe will be a slow process.
Nicholas teacher came by twice this week. He really did well. He gave his teacher his full attention. I came home from work and all he did was turn his head and went right back to his studies.
Today Nicholas was finally able to attend bible class. After we got lost for a while, we could not find the classroom. Nicholas fit right in. I was so nervous that I stayed out side the front door of his classroom like a lost puppy.
Nicholas talked to Christian over the phone this week. He is actually saying he’s missing his little brother.
Nicholas received an early Halloween gift from his Titi Mary and Uncle Manny from New York. Christian and Nicholas also received some great gifts from Titi Denise, Uncle Rick, Bianca and Titi Lizette. Thanks Guys
As always thank you everyone for you thoughts and prayers.
Nicholas Dad
José
Wednesday, October 22, 2003 2:57 PM CDT
What a great day today was. The weather is great...not to hot or to cold, the sun was shinning. We went to the state fair and had a blast. Nicholas was able to ride on some rides. His favorite was the roller coaster.
When we first asked his doctors about the fair they were like "no rides, no animals, make sure you wash your hands" ext. There have been so many commericals about the state fair and he's been wanting to go. So we went.
I held onto him so tightly he said "mom your hurting me" so I eased up a bit. The first ride we went on was the swing. He stretched out his hands and said WEEEEE. It was great to hear that, the fun didn't stop until we left the fair. The only thing missing was Christian. We miss him so much. We love you and can't wait till you come home.
On another bright note we were able to see Jacob, Sharon and Scott at the clinic yesterday. He looks so good. It was great seeing them.
Please stop by his site and say hello.
http://www.caringbridge.org/va/jacob
Thank you all for visiting Nicholas's site we really appreciate all of your kind words.
Helene
Monday, October 20, 2003 7:39 PM CDT
Nicholas had a very rough night on Friday. We all hardly slept. Poor guy was vomiting all night.
Saturday he was tired but was able to played a little. Sunday He was almost back to his old self. It is so great to hear his hearty laugh.
He was even running around the house, which made Mommy and daddy very nervous. He was able to played all day Sunday. He even got his appetite back around 10:00pm last night; of all things to eat he just wanted grits. Well, you can never deny a southern boy his grits so he had a big bowl of grits and drank some milk. His daddy is an oatmeal man, which is om with Nicholas.
His meds level was 12 today which is ok,We now have to level him off to about 15 to 19.
Nicholas schoolteacher came by today. He really enjoyed his schoolwork. He was able to practice his letter writing.
We are still trying to get him to use his left hand.
You think that would stop him from playing his guitar. No way,
We just put a strap on his guitar and away he went playing his guitar all day long.
Nicholas has this video he plays everyday and I mean everyday.
It is Bye Bye Birdie with Ann Margaret. He pretends to be Conrad Birdie in the picture. For those of you who have never watched it; it is a spoof on Elvis Presley going off to war.
We would like to thank Miss Barbara again. We were able to go to Zany Brainy and Toys R Us. Nicholas picked out a lot of new toys. Dad helped him pick out mostly games to help him with his motor skills.
Sunday and today were two great days for Nicholas. Thank you God.
Nicholas goes back for more tests Tuesday to get ready to start his Chemo.
Thank you all for visiting Nicholas site and I wish all of you many blessings.
P.S. We all miss you Christian we cannot wait until we can do full family hugs again.
Be good for everyone in New York. Keep warm baby, we all miss you and love you very much.
Nicholas Dad
Jose
Friday, October 17, 2003 7:00 PM CDT
Nicholas has had another step backwards today. His Mom notice about an hour after she gave Nicholas his anti-seizure meds. He had almost fainted and his eyes were twitching and then he vomited. We have experienced this with Nicholas before so Helene took Nicholas to Duke to have his seizure meds level checked. Since his surgery they have increased his normal anti-seizure dosage. We waited all day for the results and finally with a lot of persistence from my wife and I, we finally got his results. His level was 38!!! Nicholas level should be 15. Sure enough he was over medicated.
He is going to have a rough 2 days but he should recover as the levels go down. I pray we can stabilize his level very soon. The doctors say that the swelling will take some time to come down. Right now Nicholas has been in bed all day and extremely off balanced.
On a brighter note Nicholas received 2 generous gifts from a special friend Barbara. We are planning on taking him to Toys-R-Us to pick out some stuff. Thank You Barbara.
Christian we miss you so much. We haven’t had a complete family hug with out you. I heard they tired you out today. Sleep well my angel. Tell Grandma to dress you warm its cold in New York.
P.S have you tried the pizza or Friendly’s ice cream yet? How about White Castles...they're our favorite places to eat at.
Thank you all for visiting Nicholas site and I wish all of you many blessings.
Nicholas Dad.
Thursday, October 16, 2003 9:56 PM CDT
Nicholas came home yesterday. He is using his left arm more and more. And his hand squeeze is improving.
The swelling has not gone down yet. The doctors keep saying in time.
I am sending him in for another check up tomorrow so they can check his swelling before the weekend.
The swelling is like the size of a tennis ball.
I would like to give many thanks and prayers to Jake Griffith and his mom Susan and to Cheyenne Marie Fiveash for spreading the word to pray for Nicholas on their web sites. So many people have been dropping by and signing his guess book letting us know that Nicholas is in their thoughts and prayers. Can you also keep in your thoughts Christopher (Nicholas and Christian’s cousin) he suffers from seizures.
Please give them a visit also. They are also going through similar battle.
Big Jake http://www.caringbridge.org/page/jakegriffin/
Cheyenne http://www.caringbridge.org/tx/cheyenne5/
Please continue to put Nicholas and these children in your prayers.
P.S. To Christian: Hopefully Titi Yvette or Heather will read this to you. Mommy, daddy, Nicholas, Mimi and Xena miss you so much. We hope that you are enjoying your time in NY. We can't wait for you to come home. We love you very much.
God Bless
Nicholas Dad
Tuesday, October 14, 2003 9:47 PM CDT
Another night for Nicholas at Duke Hospital. They did an MRI today at about 6pm. We are waiting for the results. Nicholas has gained a little more movement in his arm. THE GREAT NEWS IS HE IS ABLE TO SQUEEZE MY FINGER WITH HIS LEFT HAND! THANK YOU GOD!
He still is getting seizures with his left arm. He yells out “ Mommy, here it comes again then the twitching in his arm starts. It last for about 45 seconds. The swelling has not gone down yet. I believe it has gotten bigger. The Doctors are waiting for the MRI results.
I would like to give many thanks and prayers to Jake Griffith and his mom Susan and to Cheyenne Marie Fiveash for spreading the word to pray for Nicholas on their web sites. So many people have been dropping by and signing his guess book letting us know that Nicholas is in their thoughts and prayers. Can you also keep in your thoughts Christopher (Nicholas and Christian’s cousin) he suffers from seizures.
Please give them a visit also. They are also going through similar battle.
Big Jake http://www.caringbridge.org/page/jakegriffin/
Cheyenne http://www.caringbridge.org/tx/cheyenne5/
Please continue to put Nicholas and these children in your prayers.
P.S. To Christian: Hopefully Titi Yvette or Heather will read this to you. Mommy, daddy, Nicholas, Mimi and Xena miss you so much. We hope that you are enjoying your time in NY. We can't wait for you to come home. We love you very much.
God Bless
Nicholas Dad
Monday, October 13, 2003 7:57 PM CDT
Nicholas is in the Hospital today. He woke up his Mom because he lost control of his left arm it was jerking up and down.
He never lost consciousness. He kept trying to control his left arm with his right. He was able to talk to us all the to the hospital.
He is staying over night for observation. They have him really medicated right now.
His has very little control of his left arm and no control in his left hand. We are praying this all comes back.
Unfortunately we are back to square one with his dilantin level. It was 8 when it should be from 15 to 20.
I would like to give many thanks and prayers to Jake Griffith and his mom Susan and to Cheyenne Marie Fiveash for spreading the word to pray for Nicholas on their web sites. So many people have been dropping by and signing his guess book letting us know that Nicholas is in their thoughts and prayers. Can you also keep in your thoughts Christopher (Nicholas and Christian’s cousin) he suffers from seizures.
Please give them a visit also. They are also going through similar battle.
Big Jake http://www.caringbridge.org/page/jakegriffin/
Cheyenne http://www.caringbridge.org/tx/cheyenne5/
Please continue to put Nicholas and these children in your prayers.
P.S. To Christian: Hopefully Titi Yvette or Heather will read this to you. Mommy, daddy, Nicholas, Mimi and Xena miss you so much. We hope that you are enjoying your time in NY. We can't wait for you to come home. We love you very much.
God Bless
Nicholas Dad
Sunday, October 12, 2003 5:33 PM CDT
Sorry, for not updating since Wednesday. Nicholas is recovering well.
WE HAVE NEW PICTURES UP!
We are still waiting for the swelling to go down on the right side of his head but his eye looks really good.
It was getting red for the last two days but today it looks great.
Nicholas first day of Bible study was today but we were afraid to take him due to the swelling. I’m sure he will be fine to go next Sunday. Nicholas is doing amazing his walk has improved just about 100 He is still very weak but getting stronger everyday. He has been taking naps and playing a lot of sit down games. He loves numbers; everything he does has to involve numbers. Even when he eats he always asks how many bites does he have to eat. Then as the negotiator that he is we go back and forth as too how many bites he needs to eat.
Nicholas changed his mind again; he no longer wants to be a cowboy. His mom took him shopping for a costume and once he saw Blue Clues he wanted nothing else. So BLUE CLUES it its. Christian is going to be a Roo the kangaroo, from Winnie-the-Pooh.
I would like to give many thanks and prayers to Jake Griffith and his mom Susan and to Cheyenne Marie Fiveash for spreading the word to pray for Nicholas on their web sites. So many people have been dropping by and signing his guess book letting us know that Nicholas is in their thoughts and prayers. Can you also keep in your thoughts Christopher (Nicholas and Christian’s cousin) he suffers from seizures.
Please give them a visit also. They are also going through similar battle.
Big Jake http://www.caringbridge.org/page/jakegriffin/
Cheyenne http://www.caringbridge.org/tx/cheyenne5/
Please continue to put Nicholas and these children in your prayers.
P.S. To Christian: Hopefully Titi Yvette or Heather will read this to you. Mommy, daddy, Nicholas, Mimi and Xena miss you so much. We hope that you are enjoying your time in NY. We can't wait for you to come home. We love you very much.
God Bless
Nicholas Dad
Wednesday, October 8, 2003 4:22 PM CDT
Nicholas had a nice day today he played and watched his favorite shows.
He did not do any running around at all he just played sit down games.
(Not that we would let him run around any way.)
His Mom Helene was concerned about the swelling not going as down as we would like and he is having some leakage coming from his right ear.
She called Doctor George this afternoon; he wants her to bring Nicholas to ER for observation. Nicholas may have to stay the night.
It is 10 PM and Nicholas is HOME!!!
It turned out he has an ear infection.
What a Roller Coaster.
Please continue to put Nicholas in your prayers.
God Bless
Nicholas Dad
Tuesday, October 7, 2003 7:00 PM CDT
HOME SWEET HOME
Nicholas came home yesterday around 3:00. His head is still very swollen.
He is walking on his on with a limp on his right side. We are praying as the swellen goes down his motor skills will improve. His speech is also improving some. He is definitely getting back to normal. He wants to do everything by himself which makes us very nervous. He is also eating up a storm. Nicholas had to go back to the hospital today just for a blood test.
Gees, Just when we had his meds leveled out they messed with it again.
Today he took it very easy, he watch his favorite shows and played some card games.
Please continue to pray for our Little Brave Heart Nicholas. I will try and update you everyday. God Bless you all.
Nicholas' Dad
Monday, October 6, 2003 11:57 AM CDT
Day 8, Coming home today!!
Nicholas should be coming home today. So far he does not have any fever. They found some bacteria and gave him an antibiotic which helped get rid of his fever. He has been walking around more the last 2 days on his own, we just spot him just in case. He gets mad because he wants us to let him go on his own; which is just like Nicholas. The speech, pt and OT therapist have all been around to see Nicholas these last 3 days.
Nicholas' motor skills are improving everyday. He is having some trouble with his right foot. It seems he can hardly move his foot but, every couple of hours his range of motion improves. We think this is because he had an IV in his foot (almost towards his ankle-which hurt him). The therapist believes when the swelling goes down in his head he should bounce right back.
We need to work on his speech it has gotten a little worse but, just like Nicholas it gets worse after surgery or a seizure then he improves quickly. We are praying that this will happen again.
Nicholas is in the playroom now having fun.
Christian is in New York now having a great time and eating all that great food. He went to the Long Island game farm yesterday. We love and miss you Christian!
Please continue to pray for our Little Brave Heart Nicholas. I will try and update you everyday. God Bless you all.
Nicholas' Dad
Jose
Saturday, October 4, 2003 9:04 PM CDT
Day 6,
Sorry for no update yesterday. Our Little Brave heart was able to go to a step down room yesterday.
To help Nicholas along with his recovery we tried and sit him up yesterday but he was unable to lift his head up; it became very painful for him. But later that day they had him stand and walk around the bed. He was very frighten but with the help of everyone reassuring him we will not let him go he managed to walk around the bed. He has 102 fever, which started last night.
Today had been another good day for Nicholas. This morning he ate a little bit of pancakes and nice cup pf milk. The swelling came down so much around his eye he has been able to open both eyes today since around 11:00am. His head is still very swollen.
We went for a walk half way around the halls. He was complaining of pain in his leg because of an IV they have on his foot. So we spent a long time with him pushing him around in a wagon. I also forgot to mention Wednesday we saw sitting in the PICU waiting room the family that went at the same time to Walt Disney through Make-A-Wish with us. Their little daughter is under going another heart surgery. In fact it, sadden me to see so many familiar faces in the step down area. These kids are amazing with all that is going on I still heard the laughter through the halls. After the walk and wagon ride Nicholas had a little lunch and slept and rested for the rest of the day.
Nicholas Grand-ma and Pa went back to New York today. They took Chistian with them to stay for a while while Nicholas recovers. I’m sure Christian will be very spoiled when he comes back. He is staying with his Grand parents, Aunt Yvette and God Mother Heather.
Thank you everyone for the continued prayers, emails and signing the guest-book.
Please continue to pray for our Little Brave Heart Nicholas. I will try and update you everyday. God Bless you all.
Nicholas Dad
Jose
Thursday, October 2, 2003 5:16 PM CDT
Day 4, day after Surgery,
Nicholas was able to drink water today. Things are going quickly for Nicholas he had his MRI at 11:00 this morning. Our little Brave heart is recovering slowly but steady. Today his right side of his face is very swollen especially his right eye. He cannot open his right eye due to swelling. He is able to tell us when he is in pain, which is wonderful. The doctors said he might go to a step down room today but there is a shortage of nurses not rooms over there. Hopeful late tonight they will move him.
I’m home now trying to take another nap. I was tired coming home today from the hospital and I took two wrong turns.
Thank you everyone for the continued prayers, emails and signing the guest-book.
Please continue to pray for our Little Big Guy Nicholas. I will try and update you everyday. God Bless you all.
Nicholas Dad
Jose
Wednesday, October 1, 2003 6:37 PM CDT
Day 3 Surgery day.
It was a rough Night for Nicholas. He was fine but they kept waking him up every hour for vitals. The surgery went very well. Doctor George was able to remove the entire tumor. Right now Nicholas is tumor free. Dear Lord I pray he stays that way. Doctor George said there is a possibility that he may loose the vision in the top right area of his right eye but only time will tell. He went in about 7:45 and came out about 2:30. It has been a long day. He is now at PICU with his Mommy. I came home foe a quick bath and nap then I will stay the night with Nicholas. We hate to leave him alone because they may strap his arms down to prevent him from hurting himself and I just can’t stand that. So we stay with him all the time.
I would like to personal thank everyone for the continued prayers, emails and signing the guest-book.
Please continue to pray for our Little Big Guy Nicholas. I will try and update you everyday. God Bless you all.
Nicholas Dad
Jose
Tuesday, September 30, 2003 6:13 PM CDT
Well it is day 2 for Nicholas at Duke Hospital. He is doing better today.
About 2:30 this morning he was asking for his dinner plate. He had three slices of peaches and some juice. About 3:30 last night he started complaining his head was hurting. This made everyone very nervous. Thank God as fast as it came it went away.
This morning was a good morning for Nicholas he had a hearty breakfast. (His favorite now is French toast.) He was even up for about an hour of playtime in the hospital playroom. He is still weak but a lot better then two days ago. He took a nap all afternoon. He is up now and giving us a hard time because he wants to go home. I had to do some negotiating to get him to behave. I'm not sure who won but he gets two surprises for being good.
His platelets were low so they are giving him a blood transfusion.
We are praying that the Lord blesses all the doctors and nurses that are going to be in the surgery room for Nicholas. We are also praying the Lord guides Doctor George's hands and skills to remove all the tumors and finally free Nicholas of all the cancer. Nicholas is scheduled for surgery tomorrow 7:45 am.
I ask to Please pray for our good friend Patty's son Sean who is also under going surgery tomorrow.
I would like to personal thank everyone for the continued prayers, emails and signing the guest-book.
Please continue to pray for our Little Big Guy Nicholas. I will try and update you everyday. God Bless you all.
Nicholas Dad
Jose
Monday, September 29, 2003 10:23 PM CDT
Nicholas has been getting very weak. We had to admitt him into the hospital today. He is still not able to keep anything down and is dehydrated.
We are hoping by being in the hospital now he can get the meds he needs to make him stronger before surgery. His grandmother and grandfather came down from New York today to help out. It is also his grandmothers birthday today. We are sorry she spent it all day on the road. Nicholas will help make a cake for her after is gets all better.
HAPPY BIRTHDAY grandma WE LOVE YOU !!!
Thank's everyone for the continued prays,emails and signing the guest-book.
Please continue to pray for our Little Big Guy Nicholas. I will try and update you everyday. God Bless you all.
Nicholas Dad
Jose
Friday, September 26, 2003 9:26 PM CDT
Please continue to pray for our little boy Nicholas. He had a MRI on Wednesday and we found that one of the tumors started hemorrhaging which is swelling, causing him to have flu like systems. The other tumor showed no change. He is scheduled for surgery on Wednesday. Please pray that the Lord bless Nicholas with a miracle and that the Lord sends Angels down to guide the Doctor's hands. Nicholas has been very tired these pass few days. He spends most of his time in bed; he likes to rest in our guestroom which he calls Grandma's room. He fights to try and play because he is too weak right now. It saddens me because even so weak he will still try to play with his guitar. He likes to cuddle up with someone in bed and watch his favorite shows like Franklin, Arthur, Dragon tales, Caillou, Clifford the big red dog, and Mister Rogers. He will also have to stop karate for awhile.
I will keep everyone posted.
Thank you all again for your continued prays, emails and signing of his guest-book.
I have put Nicholas in the Lord's hands that he may heal him and use us for his loving work.
May the Lord bless all of you.
Love always
Nicholas Dad
José
Monday, September 22, 2003 11:15 AM CDT
Well, we survived hurricane Isabel. There was a lot of wind, rain, and a few power surges, but we are all doing well. We were very nervous that day Nicholas was very tired he actually took a nap for 4 hours he slept most of the day. But after the nap he was running around and playing his guitar. Funny with all the wind and rain we felt we were at the beach listening to the ocean waves. It was actually very peaceful.
On Friday I got very sick I was out for the day. Helene Isolated me from the boys all day, at one point I thought she was going to put me in the garage. We are not sure if Nicholas got the same sickness. He has been complaining of vomiting all week but this past Sunday he actually vomited twice and this morning. These past few days he has been very tired and cranky. He seems to want to take naps all the time, and at night he is very restless. We are wondering if he just has a virus.
We called the Doctor and she scheduled Nicholas for some blood test and a checkup tomorrow.
We hope all will turn out fine. We are still waiting to see if he qualifies for the trails in California.
Please continue to pray for our boy Nicholas.
Saturday, September 13, 2003 8:23 PM CDT
Sorry about the delay in updating Nicholas’ webpage but we have been really busy. We decided not to pursue another round of radiation for Nicholas. It seems too risky for him. His Onc has suggested another chemotherapy and we are waiting on further information about this. In the meantime we have found a hospital in CA that may be able to help Nicholas. I have contacted them and will send them Nick’s medical history for review. I am hopeful that they will be able to help.
Last week was a difficult week for Nicholas. His neurologist increased his anti-seizure medication which resulted in him becoming toxic. His level for this should be somewhere between 10-20, so he became real sick, was dizzy, off balance, and had a seizure. We went to the hospital on Monday and they tested his blood level. Nicholas was 40! The Dr. was so surprised that his level had increased so high with just an increase of 25mg of dilantin. I reminder her that I had told her that this would happen and she apologized. Man this makes me so mad. You know your child and when you explain this to the doctors they have this idea that just because they have an MD they know what should and should not happen. Well we had to keep Nicholas out of school for 3 days, no karate, and off meds until his counts came down. He is now back to "normal" and loving life.
Today was our fun family day. We started out the day by going to the zoo. The boys loved it. They fed the animals and Nicholas was chasing the peacocks. The best part, according to Nicholas was riding the pony, Christian didn't like it (it was his first time on a pony) and I think he was scared of it. Nicholas was naming all of the animals in the zoo that we saw and some of the animals that weren't there.
While we were at the petting area Christian and I were feeding the lambs and Jose was feeding the sheep I looked up and noticed Nicholas was eating a snack. I asked him where did he get this and he pointed to another stroller next to him. Our son had taken it upon himself to take food out of another person’s stroller. Luckily the other family never noticed and we had Nicholas put it back...we left that area so quickly. I felt so bad, but had to laugh at the situation.
Afterwards we went to a carnival that our church was having. They boys went on a ride together, they looked so cute. Nicholas was sitting real close to Christian and Christian was holding his big brothers hand throughout the entire ride. It was so sweet.
Nicholas said that the best part was sliding down the big hot air slide. He looked so funny, at one point he laid down (in a position similar to a cartwheel) and went down the slide that way. The ride that gave him the biggest smile was the rollercoaster. Oh how he loves rollercoaster’s.
It was great to see the smiles on their faces today. Pure magic!!
Thursday, August 28, 2003 11:21 AM CDT
Hello everyone;I would like to thank all of you for the prayers and kind words, emails, guess-book signings, and phone calls You have given us for Nicholas and our family.This past year has really been extremely over whelming to put it mildly for all of us.August 27, last year was when Nicholas was diagnosed with GBM stage 4 brain tumor. He has gone through three Surgeries to remove these tumors that keep returning. Last Thursday Nicholas was rushed to the hospital again because he had gone into a seizure. Last Friday a MRI was done. We found out this past Monday that the 4th tumor had increased in size and two more tumors have returned. The Chemo he was on did not work. We are in a major crossroad. I’m begging that the Lord cures Nicholas and helps us with the decisions we will have to make next week. It seems all the Chemo they have tried on Nicholas is not working. This beast of a cancer keeps returning. Nicholas first tumor, which came in the front right side, has not returned. They had done radiation for the first tumor. That area thank God has been cancer free for a year now.All the other tumors seem to keep returning where the second tumor had formed on the right side by his ear.Since the other tumors were not in the radiation field they are considering surgery then radiation on this second area. The third tumor is also in a tricky area so they are unsure if the can operate at this time. I’m writing this email to keep families and friends updated on Nicholas and for a plea to please continue to pray for Nicholas. I know many of you have never stopped praying for Nicholas and our family. This cross road Nicholas is at right now is very scary for Helene and I. We have heard of all the pray groups from all over the United States, Puerto Rico, Canada and even Italy this is just amazing Praise the Lord, Thank you all so much. The emails, phones calls, cards and gifts for Nicholas have been just so wonderful. We really enjoy reading the messages left on Nicholas web site when you sign his guess book. To see Nicholas you see a boy with so much life and energy. He lives life to the fullest everyday. He is in kindergarten now and really loves it. He starts his first guitar lesson this Friday. This past Monday he started Karate. He really loves Karate he jumps and laughs all the time he is there. We put him in Karate because right now it is not a contact sport. He is not allowed to play soccer, or gymnastics so we thought he might enjoy karate. I will be updating new pictures on his web site so please pass by his website and drop a message. The messages really help for we are living one day at a time.
Thank you all for everything you have done.
God bless all of you and live each day to its fullest.
Love Always Niicholas Dad, Jose (Choo-Choo)
Wednesday, August 20, 2003 7:38 PM CDT
Sorry everyone for the delay in updating the Nicks website. We have been very busy around here. Nicholas has been going to the pool and he finally was able to go bowling. Boy did we have fun.
Helene and I have not been bowling in ages I was amazed at the advastments.
Nicholas had a wonderful time.
He loved bowling so much a couple of times he ran up to the other lanes to bowl.
At one point Nick through the bowl and it stopped ¾ down the lane. We had to get the helpers to go get the ball.
We had such a great time. He was ahead of his Mom until the very end. Helene had a strike on her last try.
Nicholas has been practicing Magic. He really enjoys it. He has a magic hat, magic wand and a bunny rabbit, which he pulls out of his hat.
This week is back to school. He was happy to go to school again.
Please continue to keep Nicholas and our family in your thoughts and prayers.
In Nicholas words. God bless the birds that sing and God bless everything.
Monday, August 11, 2003 12:35 AM CDT
Our boys home. He looks great and is happy to be home. He could have come home yesterday but his Onc had the weekend off and the residents didn't want to release Nicholas with being seen by Dr. G. The funny part was that Dr. G never came into Nicholas' room, Jose saw him in the hallway and talked to Dr. G and he said that he has been updated and that Nicholas can go home. This really sucks because we wanted to have a little celebration for Christians 1st birthday and couldn't.
Hopefully we can resume Nicholas's summer break without any more episodes. He starts school back next monday. I'm hoping to be able to go swimming and bowling with him. Maybe even to the movies.
As always please keep Nicholas in your prayers and thoughts.
Saturday, August 9, 2003 5:41 PM CDT
Good news, Nicholas' CT showed no change, there was a minor resportory problem which resulted from his seizures. His doctor said that his seizure medication needs to be adjusted/increased.
Nicholas is doing well. Right now he is sleeping soundly (they gave him some heavy medication to stop the seizing so he's sleepy) but when he was awake he was drawing and watching his favorite shows, asking where everyone was.
It looks as if Nicholas will be spending the weekend in the hospital so hopefully we will be home on Monday. An upside to this is that we have a big room so either Jose and I can sleep on a cot instead of a chair. Always look for something positive.
Again please keep Nicholas in your thoughts and Prayers.
Friday, August 8, 2003 8:22 PM CDT
Please Keep Nicholas in your thoughts and prayers.
Nicholas was rushed to the hospital tonight due to seizures and respiratory problems.
I will keep everyone posted as soon as I can.
Dear Lord God I ask you to watch over Nicholas and heal him of this cancer.
Amen.
As Nicholas always says, Dear God Thank you for the birds that sing and thank you God for everything.
Nicholas Dad
Saturday, August 2, 2003 1:16 AM CDT
Nicholas had his first dose of chemo and he did wonderfully. He continues to amaze me and his dad. After treatment (which he slept thru) he wanted to get up and go play in the playroom. The only difficult part was that he was hooked up to the I.V. pole which slowed him down on running thru the hallways. As soon as we got home he started playing his guitar. I hope he continues to handle the rest of the chemo in this manner.
Now with him being tracked out of school we have made plans to go bowling...which he has never been to a bowling alley, and go to the pool and have a fun playing with his friends.
As always please continue to keep Nicholas in your thoughts and Prayers.
Tuesday, July 29, 2003 8:12 PM CDT
Nicholas had a wonderful 2 weeks in school. He is on vacation now because it is a year round school.
I guess we were so nervous having him start school. He is such a big boy. It takes Nicholas a while to get to his class because he stops and talks to all the teachers on his way to his class and wouldn’t you know it his classroom is the last one down the hall.
Well we got Nicholas MRI results and new growth was found. It is in the same area as the last two tumors.
Please keep Nicholas and us in your thoughts and prayers as we try everyday to draw strength and hope.
We find Nicholas is our strength and hope.
Hope is hearing him laugh, hope is watching him run, jump and sing and play his guitar.
For us hope is having our family time hugs and watching Nicholas be a big brother to Christian.
Nicholas spirits are very high. He is enjoying his vacation very much. Next week is Christian’s First birthday party and Nicholas can’t wait for the cake and ice cream. He said he wants to help Christian open up his presents and show him how to play.
Friday, July 25, 2003 12:02 AM CDT
Nicholas loves school. He hates to wake up so early in the morning but once he's awake he's like "are we going to school now". Since he's in a year round school he is tracking out for 3 weeks. This is cool we can have a summer.
However; on Monday he goes for another MRI we are hoping this will be good news. We still aren't sure about chemotherapy his Onc is suggesting. So we are seeking other hospitals for their opinions.
Please keep Nicholas in your thought for this MRI.
Tuesday, July 15, 2003 6:00 PM CDT
What a great first day of school Nicholas had. He loves playing in the playground and doing art work. He said he sits next to a boy and a girl..but doesn't know their names yet.
He's so funny in the morning when we drop him off he says hello to all the teachers and if they say "Hi" back he wants to go in their classroom. He loves carrying his lunch box and he got a new backpack from his cousin Heather (a Spiderman bag with it's own cape and rack to drag). He looks so grown up with everything on him.
The teachers and staff have all been so nice to us and easily accessible whenever we need their assistance for questions. I really do like this school and am really glad that Nicholas is going there. So if you get a chance check out their website it's: http://morrisvillees.wcpss.net/
We still haven't met with his Onc yet to discuss obtions so we aren't sure what route we will be taking. His Onc wants to set up an MRI for Nicholas but I want to wait until he tracks out of school, which will be in 2 weeks so that he won't miss any school, and set the MRI for that time. I'm hoping he will be understanding for this.
We'll update you more once we know more. As always please keep Nicholas in your thoughts.
Oh on another note Christain will be turning 1 years old in a couple of weeks. Boy has time really gone by fast.
Thursday, July 10, 2003 2:01 PM CDT
Today was Nicholas' first day in Kindergarten. He looked so cute, he had his backpack on...which is so big on him we have to find him a smaller one. Then he had his Scooby-Doo lunch box. He was so excited to be carring his lunch box. He didn't seem fazed by the idea of going to school but more excited about having a lunch box to carry around.
His dad and I on the other had were so excited an nervous. We video taped him eating his first school breakfast and then walking into school and his classroom. As soon as we got into the classroom he left us and went to play with some of the toys and other kids in the class. We waited around a bit just to see how he was. We even said "Bye Nick, see you later" he was to involved in other things to notice us leaving.
It may sound silly but for any parent taking their child to their first day of school is already emotional but for a parent with a special child it's 10 times more emotional. I can't wait to pick him up and see how his day went.
Friday, June 27, 2003 9:52 AM CDT
Nicholas continues to astound me. He has bounced back from his surgery so well it's like he never he had one. We met his new teachers at his new school and they were amazed at how Nicholas was. His teacher said that to look at him and look at his medical history they don't seem like the same person. Nicholas took to the school so well. He was playing on the jungle gym, and running around the play yard, he even participated in a PE class that were jumping rope.
We met with his Onc and they suggested another type of chemotherapy. We are seeking advise from St Jude's hospital and UNC Chappel Hill.
Please continue to pray for Nicholas and our family.
Thursday, June 19, 2003 12:11 AM CDT
Thank you everyone for all your prayers and support.
For a quick update Nicholas is recovering well.
They were able to remove the entire tumor. Thank you God.
He is still highly medicated. We are not sure when he will be coming home.
Thank you, All of you who prayed and gave their support to Nicholas.
Got to run back to the hospital. I will let Nicholas know that everyone is praying for him.
I will also read the guess book to him. He gets a kick out of the guest book.
God bless all of you and your families.
Nicholas Dad
Jose
Wednesday, June 18, 2003 7:51 AM CDT
Nicholas Tumor has double in size. The doctors have secheduled surgery for Nicholas about 2:30 pm today. The surgery should last about 4 to 5 hours.
Please say a pray for Nicholas and for the Doctors that God may grant them wisdom and guide theirs hands during the surgery.
Please visit Nicholas Guest book.
Thank you and God bless.
Nicholas Dad
Jose
Saturday, June 14, 2003 9:04 PM CDT
Nicholas has had a couple of great days. Its been raining a lot around here and he gets upset when he can’t
play outside with his friends. On rainy days he likes playing on the computer. His favorite sites are www.pbskids.com and www.disney.com. He also likes playing with Play Doe. His teacher at his school says he is doing great. Nicholas is doing well, he is jumping, running around and playing like always.
To see him you would not know he has had two major brain surgeries
He will have another MRI in the middle of July. We are now given him an alternative medicine which we pray with the Lords blessing will rid Nicholas of this cancer. I pray that the tumor will shrink or be gone by the middle of July.
We are drained but Nicholas is the one that gives us strength to go one.Please continue to pray for Nicholas and all the brave children fighting Cancer.
God bless all of you
Nicholas Dad
Jose
Monday, June 9, 2003 8:44 PM CDT
We had a rough week. On Tuesday Nicholas’s school called letting us know he was not feeling well.
Nicholas was complaining his tummy hurt. Helene rushed to his school to check on Nicholas. For any parent who has a child battling cancer any small ailment is very scary. Nicholas looked very tired so Helene took him to Duke just in case. Nicholas was playing in the car all this time. When she got to the hospital Nicholas just wanted to go home but Helene stayed in the emergency parking lot for about 20 minuets she was afraid to leave. A few minutes later Nicholas went into a seizure. We had a ct scan and an MRI done. Our biggest fear returned, another tumor has grown in the same spot as the last one, this tumor making it number 3. We are discussing Nicholas options with the doctors now so I will update this soon. I ask everyone to please pray for our little boy Nicholas and our family. I thank God everyday that Nicholas despite everything that has happened still runs, plays, and laughs everyday. Nicholas is going to the movies tomorrow with his Aunt. He wants to see “Finding Nemo”. Right now I truly believe when you look into the sand you will only see one set of footprints.
God bless you all
Nicholas Dad,
Jose
Saturday, May 31, 2003 2:06 PM CDT
Nicholas graduated from Primrose school this week. It was a great ceremony. All the kids wore red cap and gowns. They entered into the room in a procession with Pomp and Circumstance playing in the backgroud. Nicholas was seated in the first row. He was looking around for us when he entered the room. Once he saw us he started waving. It was really nice, they all looked so cute. During the ceremony the children sang some songs about graduating and going onto kindergarten. Their teachers called each childs name and handed them their diploma.
It was so nice to see Nicholas at his graduation. I hope to have pictures of the graduation up shortly.
Yesterday was a beautiful day and we went to the pool. He loves going to the pool. He played with Arit and some other children. We were hoping to go to the pool today, but it's raining. Hopefully tomorrow.
Wednesday, May 28, 2003 8:41 AM CDT
Excitement in our house today. Nicholas started back in Primrose. He was so excited about going and kept saying "I'm going to Primrose, I'm going to Primrose". He walked into the classroom as if he never missed a beat.
Me on the other hand dealt with seperation anxiety. I waited outside his classroom watching him. Just to see how he was and then Christian went and knocked on the door. Well the students turned their attention towards the door. I knew in my heart that Nicholas was saying "mom go home" so I left.
I can't wait to see him later today so that he can tell me about his day. I'll let you know once I know.
Another good news was that Nicholas was accepted to the year round school. This is great because now we can schedule his doctor visits around his off time and he won't have to miss any school. He starts school on July 7th so we have to start getting him some school clothes and a lunch box and a back pack. Our baby is growing up.
Please continue to pray for Nicholas and our family.
Wednesday, May 21, 2003 10:25 AM CDT
What a great trip to NY we had. Nicholas was so excited to see his friends and family. The first night we were in NY his Grandparents and Aunt took him to see his first High School concert. He loved the music and was dancing and marching to the music. There were times when he pretended to be the conductor.
The next day was his bithday party. He got to see so many people and meet some new friends. He loved playing with his friend Billy and his cousin Breanna. He talks about them all the time now. I hope to have some pictures of the party up soon.
Then we went to see his first Broadway play,the Lion King. What a great show. We sat in the third row from the stage. He was so excited when they started singing that when they stopped he wanted to know if they were going to sing some more. On our way out of the play and nice couple gave Nicholas a blow up hammer and he was playing with it all the way home. He even got on his Grandpa's nerves with the noise....but I don't think he minded that much.
On Monday we went to the beach. How cold it was in the water, but Nicholas wanted to go in so we went. We rolled up our pants and went in. Me, Nicholas, Christian (his first time at the beach) and his Aunt Yvette. It was great Nicholas has always loved the beach. He was trying to make a sand castle but we unfortunately didn't have any buckets. Christian was eating the sand so with that we had to leave.
I think both Nicholas and Christian had such a great time in NY. It was great to meet his Grandfathers co-workers at CI high school, and his Aunt Yvette's co-workers, and his cousin Heather's co-workers. You are all the best.
Friday, May 9, 2003 8:50 PM CDT
Today was both a joyous and emotional day. As I mentioned earlier how nice Nick's old school was. Well they surpassed the act of kindness. Since Nicholas' class will be graduating and attending Kindergarten soon. Leslie and Tammy have asked if we would be willing to let Nicholas participate in his classes graduation ceremony.
We were so thrilled that they wanted to include Nicholas in this. So many emotions came from us. Jose and I said we will probably be the only family there crying hysterically at the site of Nicholas in his cap and gown. Even Leslie said she would get emotion since Nicholas is very special to her and to the teachers at Primrose. We both started tearing at the mention of him at graduation.
We went to Primrose and picked up the songs he will be singing. We were also lucky because the Tumble Bus was there and they let Nicholas play. It was great to see him jumping and tumbling. His teacher said she thought that he would be limited, but she was so happy to see that he wasn't. The Tumble Bus was his favorite activity before leaving his school. Seeing the Tumble Bus we were delighted and terrified at the same time that he wouldn't be able to go in, but they were so happy to see him they asked if he play. His face lit up at the idea of playing in the Tumble Bus.
We sat and watched him play in the bus. There were times where we cried and times that we laughed. As I said it was a very emotional day for us.
Please continue to keep Nicholas and our family in your prayers.
Monday, May 5, 2003 7:26 PM CDT
What a great weekend we had. Nicholas played outside all weekend long. He and his friends were playing in the sprinkler. It was so great to hear him laugh, it reminded us of last summer before his diagnosis. It seems like such a long time ago.
He looked so good in his bathing suit. Although his outfit wasn't color corrdinated. He was wearing a shocking green bathing suit with white and yellow flowers. Real retro. Then he had on his blue water shoes and then a bandana with the Puerto Rican flag on it.
Today was a little emotional for us. We went to his old school, Primrose, to see if they had room in his old classroom. His Dr. said we can enroll him in school. Leslie and Tammy were so happy to hear about him coming back. They were like "we'll make room". They have been so nice to us. So if you have a Primrose school nearby I recommend you place your child there.
As always please continue to pray for Nicholas and our family.
Tuesday, April 29, 2003 4:47 PM CDT
Great News! We finally got the result of the MRI, CT scan, PET scan and chest X-Ray. No trace of Cancer or new cancer growth. Dr. G said Nicholas was doing great. We have been praying for this for some time. Hopefully the cancer will stay away. Please keep praying.
With this great news this means we can go to NY to celebrate Nicholas' 5th birthday. It's been such a long time since he's seen his cousins, aunts, uncles, etc. I haven't told him yet, but we are trying to get him tickets to see the Lion King on broadway. I hope he likes it.
Sunday, April 27, 2003 6:58 PM CDT
What a great day it was today. It finally stopped raining and the sun was out. Really beautiful.
We also went to the Universoul circus today with my sister Marie and my niece Alyssa. It was a blast. Nicholas just loved it. Now he's dancing like the clown and the break dancers were. He's so funny. He's walking around the house saying "When I say BIG TOP you say CIRCUS". He is also doing a lot of tumbling like the acrobats did. It's great to see him like this.
Tomorrow we finally get the MRI, CT scans and PET scan results. Although his Oncologist told us that there wasn't anything new. We still get nervous. Please keep Nicholas is your prayers.
Tuesday, April 22, 2003 4:25 PM CDT
What a great Easter we had. The boys looked so good and behaved well in church. After chuch we had a nice quiet family day. We tried to have an evening where we all sit and watch TV together. Nicholas and I wanted to watch Harry Potter. This didn't go as well as we hoped. Nicholas got tired of Harry Potter and wanted to watch Caillou and Christian wanted his bottle. So after pleasing both boys Chooch and I watched Harry Potter together...maybe it did go as we planned?
Thank you to Sharon Dungee for the wonderful Easter basket she sent Nicholas. He was extremely excited by the basket. He loves M&M's and the game was perfect. We have enough candy to last us till Halloween.
We finally got the MRI, CT scan and Chest X-Ray results. It showed no trace of new cancer. Whew! So it was after all the new anti-seizure medication that needed to be adjusted. However, just to be on the safe side Nicholas is going to have a PET scan on Thursday. We are praying that this will also be good news.
Thursday, April 17, 2003 5:54 PM CDT
Such a beautiful day it was today. The weather was around 86 and the sun was out, but it wasn't hot just a cool breeze. Nicholas was able to play outside today with Stephanie and his friends.
The boys also got to see the Easter Bunny and take a beautiful picture. They look so handsome. I'll tell you when these guys grow up...whatch out girls because here come the Castillo brothers.
Tomorrow we plan on going to Bond park for the annual Easter Egg hunt. It's so much fun, Nicholas has been doing this every year and he loves it. He was even mentioned in the Cary news a couple of years ago.
Please make sure you check out our new pictures on the link below.
Happy Easter to all, and God Bless you.
Tuesday, April 15, 2003 1:44 PM CDT
Nicholas came home today. We were told via preliminary reports that neither the MRI or CAT scan showed any new cancer. Which we are pleased to know. They believe that his seizure medication needs to be increased.
He's a little off balance today, but he's glad to be home and we are glad to have him home.
Monday, April 14, 2003 10:25 PM CDT
Yesterday started out great. My sister and my niece came over to visit. It was a perfect day. Unfortunately Nicholas went into another seizure. We had to call the EMT's and rush him to the hospital. We've been there for 2 day's now. They have run all sorts of tests on him.
They ran a CAT scan (didn't show any new cancer) which is good news, they are testing him for his Dilantin level, and also gave him a chest X-Ray and MRI (both of which were scheduled for this Friday), but I guess since we were there and due to his seizure they decided to run the tests early.
Nicholas is a little cranky mostly due to the anesthesia from the MRI...he gets really mad afterwards. His dad decided to stay with him at the hospital tonight. Yesterday we all stayed with him. Christian in his car seat, Jose in the lounge chair and me either on the floor (which I really like) or sharing the bed with Nicholas.
When I left the guys Nicholas was sleeping like a baby.
As always please continue to have Nicholas in your prayers.
Love
Helene
Saturday, April 12, 2003 7:03 PM CDT
What a beautiful day it was today. All the neighborhood kids were outside playing. It was great to see them all sharing their toys, riding their bikes, and such laughter. Nicholas just loves riding in the electric car. The weather must have been around mid 70's. The sun was out which was really great because we've had rain all week long. Nicholas and his dad were doing yard work together. Anything to play in the dirt and he loves it.
Tomorrow his Aunt Marie and Ally will come over. We are going to make a cake. Yummy! We've had a break from the hospital for about a week now. It's been wonderful. We've been able to lounge around, sleep late and just be.
I would like to send a special thank you to the Central Islip, NY Lion's club for their thoughtfulness and kindness. It means so much to us what you've all have done. May God Bless all of you.
As Always please keep Nicholas and our family in your prayers.
Tuesday, April 8, 2003 2:56 PM CDT
Another great day. Nicholas and his dad went to the movies to see the new Piglet movie. Well now he calls himself piglet and his dad is Pooh and I am Kanga and Christian is Roo. What an imagination. His appetite is starting to come back. He now has a craving for French Toast.. or are they calling it Freedom Toast?
We also went to the hospital for his lab check up. We met up with the Deal family and wished them best of luck. They are going back home. They have really been nice to Nicholas.
We started Nicholas on Protocel. He is doing great with it and doesn't mind the taste. If you are interested in Protocel go to: http://www.protocel.com
I forgot to mention over the weekend we went to his Aunt Marie's house and Nicholas got to see the Easter Bunny. He has been waiting such a long time to see him and is wondering when he will be visiting him at home. He also got to ride the train. He just loves doing that. He was waving to everybody. I love seeing him smile.
I also registered him for kindergarten. WOW he's going to be 5. It seems like yesterday he was such a baby. Time has surely passed by very fast.
To update everyone about Christian, he is crawing all over the place and has been pulling himself up. It won't be long before he starts walking. We had to lower his crib since he's standing. He's so long, almost 30 inches and weighs 21 lbs.
All I can say is we have been extremely bless by GOD when he brought Nicholas and Christian into our lives.
NEW PHOTO SITE...MORE PICTURES. SEE LINK BELOW
Sunday, April 6, 2003 8:46 PM CDT
Today was a great day. The weather was beautiful. We were all outside. Of course the parents were doing yard work, but Nicholas was running around and playing with his friends. They have been so great with him. We are truly blessed to be living in this community. Christian is loving the outdoors he's getting so big and as always has that great smile.
Tuesday, March 25, 2003 4:41 PM CST
Nicholas had his 3rd treatment of chemo (CPT-11) today. He has handled it well. He was great today. While he was having his chemo treatment he didn’t want to sit down and watch TV…like he normally does. He was standing on the IV stand and I carted him around the halls of the hospital. It was like a ride for him. We went to the windows and looked out playing “I Spy” on all of what we saw outside. It was a great day. When we came home Stephanie was waiting for Nick and they went straight outside to play.
The only tough part is that Nick’s allergies are acting up so now he has to take his allergy medicine in addition to the chemo that he’s getting. But none of this has slowed down his energy level. He’s truly amazing the energy level that he has. He continually inspires us.
Today the clown came by and made Nick a paper hat with 2 feathers in it. He was wearing it while he was riding the IV cart. He looked so funny like he was some sort of Pirate.
Also this past Saturday there was a Brain Tumor Cancer Awareness walk. We were apart of the walk along with his Aunt Marie and Cousin Alyssa. It was a beautiful day for the walk and the charity raised a lot of money. We were also glad to see our friends the Smith family. Nicholas and their son Brandon played so much, it was great to see them playing together.
Also coming up is the Brain Tumor Action week (May 4-10) this is a collective effort to raise awareness to our elected officials about brain tumors. There is also “A Book of Remembrance and Hope” that will be given to our elected officials. If you are interested in being a part of this book you can submit a story about how Nicholas’ brain tumor has affected you or how it has affected him. Please include in your story the following information:
1. Your full name
2. Address
3. Phone number
4. Email address
5. Name of the person the story is about
6. Picture (if you have one)
Send your story to Jeremy Shatan at info@cbtf.org no later than 5 P.M. on Friday, April 11, 2003.
We thank you in advance should you decide to write your story.
Wednesday, March 19, 2003 1:56 PM CST
Nicholas had his 2nd dose of chemo. He has done so great in taking this chemo. He just got a little sick, but once we came home he asked if he could go out and play. He was able to play with his friends, Jessica, Hailey and Jacob.
We have also been lucky enough to have his friend Stephanie come and play with him. She has really helped him play like a normal 4 year old. They play together constantly.
As for his eating habits it seems that after each treatment he looses his appetite. We are hoping that he will regain more of his appetite today.
Wednesday, March 12, 2003 4:24 PM CST
Nicholas started chemo yesterday. It was a long day for him and us too. They gave him a double dose of BCNU and CPT11. After the session was completed Nicholas didn’t feel well and was sick to his stomach. We had given him anti-nausea medication prior to the treatment, but unfortunately this has not helped him much.
Today Nicholas is feeling a lot better. He was able to drink some juice and ensure shake. He hasn’t eaten much food we are hoping that he will get his appetite back. He hasn’t asked for his Doritos yet or M&M’s. His energy has come back and he’s started riding his bike and has…as always continued to play his guitar.
Tuesday, February 25, 2003 4:14 PM CST
Met with Nicholas’ doctors yesterday and the biopsy report showed that the 2nd tumor removed was malignant. Based on this Nicholas will have the 2nd and 3rd phase of Chemo. It’s going to be a combination of BCNU and CTP11. Nicholas lab work showed that his counts were still high and his energy level is also very high. He was able to play outside today with his friend Jessica. They believe that this is a good sign that Nicholas should handle these sessions well in addition to the fact that they have removed the entire tumor.
Tomorrow Nicholas will have surgery to remove his central line (Hickman). We see this as a positive since he will have fewer restrictions placed on him.
As always please keep our family in your thoughts and prayers.
Friday, February 21, 2003 9:50 PM CST
Nicholas had surgery to remove the 2nd tumor on Wednesday, February 19th. His doctor has assured us that they have removed the entire tumor. We haven't gotten the biopsy report yet and hope to get that information on Monday.
Nicholas is doing extremely well and was released from the hospital today. He was running and playing in the halls of the hospital today. Of course the first thing that he wanted to eat was his Dorito chips.
Based on the recent diagnosis he will have to have the 2nd and 3rd chemotherapy sessions.
This took us by surprise, but our spirts and faith are still strong. Please continue to pray for Nicholas and our family.
Saturday, February 15, 2003 5:04 PM CST
We would like to thank all of you for being there for us. Despite of all the great news we just have gotten, Nicholas went into three seizures, one at home and two in the hospital. Nicholas is doing well now. He came home today. They did some tests and found a small spot about 17mm behind where the old tumor was removed. The Doctors want to do a biopsy or removal scheduled for this Wednesday. We are waiting on further tests.
Please continue to pray for Nicholas and our family during this time.
God bless all of you
Thursday, February 13, 2003 10:39 AM CST
Great News! We finally got the MRI results today. His doctor told us again that it showed no new cancer cells. As a result they aren’t going to do the 2nd or 3rd chemotherapy phase. His doctor said that we can enroll Nicholas in Kindergarten and if we like he can go back to Pre-K.
He will have to go to follow-up sessions, which include lab work every Friday, and once they have determined that his bone marrow is producing it’s own white blood cells they will remove his central line. Nicholas will need to have follow up visits by taken an MRI every two months. We ask to please continue to pray for Nicholas.
We were so excited by this news we went out for a celebration dinner. We hope to have a big celebration when his Grandfather, Aunt Yvette, Aunt Marie and his cousins come by this weekend.
We would also like to thank you for all of the Healing Prayer cards that you have sent, and to Yvette for her donation to Make-A-Wish in Nicholas’ honor.
Tuesday, January 28, 2003 at 06:27 PM (CST)
Sorry I haven’t updated the website in a few days. We’ve been really busy over here. Some of Nicholas’ counts are still rising and others have either dropped a bit or have remained the same. His counts are:
Hemoglobin: 9.7
Platelet 57
White blood cells: 11.4
Today is day 20-post transplant and his doctors are pleased with how Nicholas has handled everything. They will be scheduling him another MRI soon (probably around the 1st week of February) to see if any new cancer cells have grown. We are all praying that the MRI will still show no signs of cancer.
On a lighter note Nicholas’ appetite has expanded a bit. Not only is he into Doritos but he’s also gotten a bit of the applesauce bug. His doctors are pleased again with how his appetite has been during this chemo session…occasionally loosing or gaining an ounce or two.
Bill Gaines, of NBC17 news was kind enough to drop us a copy of the segment he did on Nicholas for Make A Wish. We would like to thank everyone who helped him with this and also Make A Wish for the precious gift they gave Nicholas and our family.
Thursday, January 23, 2003 at 06:44 PM (CST)
Nicholas’ counts are still rising. He still had to get another platelet transfusion, but his doctor told us this that he is doing well. As of today his counts are:
Hemoglobin 9.5 (this is down from the other day but it’s still good)
Platelet 79
White blood cells 5.6
I talked to his nurse the other day and she stated that the white blood cells are the first to start rising and then the hemoglobin and last would be the platelets.
Another snowstorm for North Carolina and this time he was able to play in the snow. He had a blast. Nicholas made several snow angels and many snowballs to throw at his dad. It was a great day.
Bill Gaines from NBC17 showed the Make A Wish footage that they took of Nicholas. It was a beautiful segment. It showed Nicholas playing his guitar, riding a train, and playing with Christian. Unfortunately, he called us 2 minutes prior to airing and we weren’t able to get a copy of the show. If anyone happened to tape the 5:30 news (today’s date 1/23/03) from NBC please let us know we would like a copy.
Tuesday, January 21, 2003 at 07:08 PM (CST)
Nicholas’ counts are starting to come up slowly. Friday the 17th his platelets were low and they had to give him a transfusion. Today is day 13 after his transplant and the doctor is pleased with how Nicholas has handled the Temador chemo and the bone marrow/stem cell transplant. Here are his counts as of today:
Hemoglobin 10.2
Platelet 46
White Blood Cells 2.6
The medication he is taking: Acyclovir (2 times a day), Neupogen (aka: GCSF) and Fluconazole (aka: diflucan).
We are pleased to say that his appetite has expanded to include applesauce as well as Doritos. We are now following a strict lactose free diet for him. His doctor told us that since Nicholas is Neutropenic (has low counts and is susceptible to infections) it would be better for him to follow this diet.
He is still singing and playing his guitar. He is also trying to teach his brother some things…like walking and how to hold a bottle. He’s a great big brother. Nicholas has also become the talk of the hospital. Apparently everyone likes his Daniel Boone hat that he wears. He looks so cute with it on and the mask that covers his face.
We are in the process of developing another web site, which will include more pictures of Nicholas as well as Christian, and other family members. Once this is completed we will let you all know.
Friday, January 17, 2003 at 07:33 PM (CST)
Nicholas’ counts were low today…as expected. His doctor told us that from day’s 7-10 after transplant his counts would go down and they have. As a result he had to get a transfusion of hemoglobin and platelets. We hope that within a few days his counts will start to rise (we’ve been told that day’s 10-14 after transplant they should start to rise).
We had our first winter snowstorm here, a full 1 to 3 inches. Nicholas wanted to play in the snow so bad but I wanted to check with his doctor first. So after his transfusion today he was able to play in what was left of the snow. He was so happy. Nicholas and his dad had a snowball fight and he played with his dog Xena in the snow. We are hoping that there will still be more snow left tomorrow and we can play some more.
Yesterday Nicholas and I were interviewed by Bill Gaines; our local news station (NBC17) Anchorman. This was because of the Make A Wish foundation and the wish that they granted for Nicholas. Mr. Gaines and Nicholas jammed together. It was funny to see Nicholas playing his guitar and Mr. Gaines playing the piano. At one point Nicholas told him to stop playing and to listen to him. They went up to Nicholas’ room and played for a while together. I’m not sure when this is going to be on TV, but I do know that they show this on Tuesday’s at the 5 or 6 o’clock hour.
I wanted to send a special thanks to my cousin Yvonne S. and her students for the wonderful cards and drawings they sent Nicholas. To my little cousin Maddison P. and her classmates for this nice cards and letters and also to Elizabeth B. for her donation to Make-A-Wish in Nicholas’ name.
As always you all amaze us.
Tuesday, January 14, 2003 at 08:49 PM (CST)
Today is the 6th day after Nicholas’ bone marrow/stem cell transplant. He had his daily check up today and the doctor was pleased with how Nicholas is doing. His counts are starting to drop, but he is still doing well. His doctor told us that days 7 thru 10 after transplant are the days where his counts will really start to drop. Here are his counts:
Hemoglobin 8.6
Platelet 105
White Blood cells 4.8
He’s still maintained his appetite…mostly in part to the Doritos. We should by stock in this company. I have been stocking the pantry with 2 large bags since he’s been eating so many.
As for his energy it has remained constant. He enjoys punching his Spider Man punching bag and loves playing the guitar. His brother Christian also loves to watch Nicholas and they laugh together. He’s starting to get a little tired and goes to sleep a little earlier.
Again thank you all for your words of encouragement and prayers. We read them every night and Nicholas just loves it when I tell him who’s asked about him. A special thanks to my Mom who has helped us out immensely.
Thursday, January 09, 2003 at 10:11 PM (CST)
Nicholas had his Bone Marrow/Stem Cell re-infusion yesterday (January 8, 2003). It was a long process, which took a total of 12 hours to complete. We are very pleased with how he has taken to this procedure. During the procedure he did not get sick, or loose his appetite. He has however; developed a massive craving for Cool Ranch Doritos chips. His energy level is still that of a typical 4 Year old. He still loves to play his guitar and his violin that he got from Santa Claus. Today we were able to play on his swing set and kick around the soccer ball, and sang some songs with his guitar.
Since he’s started chemo Nicholas’ immune system has been affected. As a result he has to wear a mask to eliminate any exposure from germs. His doctor told us to watch his blood counts. As of today his counts are:
Hemoglobin 8.9
Platelet 151
White Blood Cells: 12.7
Due to the chemo we know that these counts will drop, but we are praying for a speedy recovery from this session.
Once again thank you for all of your prayers for Nicholas and our family. We have been blessed with so much support. All of you who have visited Nicholas site have truly touched our hearts more than you can imagine.
Sunday, January 05, 2003 at 09:05 PM (CST)
Thank you for visiting our son Nicholas’s web page. Nicholas is 4 years old and loves music, musical instruments, singing, and sports. He is very affectionate, friendly and isn’t shy.
Nicholas was diagnosed on August 26, 2002 with a Glioblastoma Multiform; Stage 4 brain tumor. On August 28, 2002 he had surgery to remove the tumor. Due to the location of the tumor doctors were able to remove the entire Tumor. Since then Nicholas has had Radiation therapy, which started on September 30, 2002 and completed on November 6, 2002. He has also had surgery for an infusia port on September 19, 2002 and a central line and bone marrow/stem cell harvest on December 10, 2002.
As of today Nicholas is undergoing Temodar chemotherapy and will have bone marrow/stem cell replacement therapy. We go to the hospital everyday to have check-ups and blood counts checked.
On December 13th and 27th Nicholas had MRI’s done and Doctors stated it showed no signs of cancer cells. We were very pleased with this great news. It was the greatest Christmas gift. Nicholas has shown us such courage and bravery throughout this time. Please keep Nicholas and our family in your prayers.
Wednesday, January 01, 2003 at 08:19 PM (CST)
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