Big Weekend..

First I'd like to let you all know that last Sunday the 10th Diane's father passed away from pancreatic cancer. Gene Wolfe Barrett was a very respected man. He had many friends and seemed to lighten the mood everywhere he went. I was proud to call him Dad and thought the world of him. He will be missed.


Tomorrow April 17th me and 14 of my best friends will be running to raise money and awareness for Cody's Crew Foundation in the Hampton 24 Hour Relay. We are blessed to have some great runners who travel from many different states to represent Cody's Crew. Last year we took 1st in the total team mileage when all but one of our team went over 50 miles. She unfortunately was injured. This year we hope to surpass that record.
If you would like to help you can go to Cody's Crew.

Five for Fighting...

Yesterday morning while at work I got a call from Diane. She told me she just won tickets to a concert. It turns out that she not only won tickets but she won stage passes for the pre-concert warm-up. The band turned out to be "Five for Fighting"... We had to be at Lisner Auditorium on the campus of George Washington University in DC. So she and I took the Metro down and made it by 5pm. Diane and I with 4 others who had won tickets were able to have our own private 3 song warm up show. Then he (John Ondrasik) the lead singer called us up on stage to meet the band. First of all, I must say, they were all the most personable guys you would want to meet. We chatted with John and the band, talking about the crazy winter we have had and how lucky they were that they missed the snow. I was quick to mention what a fan I was and that his music has deep meaning to us and many others. I had read that he is very active with many charities. I mentioned Cody and our foundation. Not wanting anything but just to pass the word out about our cause. He was very sincere and asked questions. We posed for pictures and then had to leave so the other band could setup and practice. Diane and I went out for dinner and to burn some time before the show at 8pm.

We got back to the Auditorium and picked up our tickets at Will Call. They turned out to be great seats. We were 10 rows from the stage and the view was great. Also, the acoustics at Lisner Auditorium are very good. Anyway, the first song that he and the band sang was "Chances" and before I could get my camera ready to record he said "this is for Cody." Diane and I were so proud. I know that there were only 4 or 5 of us there that knew what "Cody" he was talking about but it meant the world to us. We stayed and watched the whole show and enjoyed every moment. Diane and I aren't use to staying up so late these days but we had a great time. I can honestly say that we are fans for life. I guess we were supposed to go to that show last night.

Oh, and just in case you wondered where "Five for Fighting" came from. It is a hockey term and actually a penalty for fighting. He is a big hockey fan. And notice the Montreal shirt he is wearing..

One year...

Hello All,

It’s hard to believe that this Saturday the 6^th will be the one year anniversary of the passing of our precious baby boy. It seems like yesterday while it also seems like so long ago. Although the pain has eased it still burns in my heart. Every day, every run and every quiet moment he is on my mind. Why did he have to go so soon? Cody could have done so much with his life. Why did he have to suffer so? In his short life he suffered more than most people who live 10 times longer. If there is a heaven, what is Cody doing right now? I hope he can see us. I hope he is proud of me. I wish he would give us a sign. I hope that he communicates with his brother and sister. I hope that he guides them and protects them throughout their lives.

I often get kudos from my friends and co-workers. They tell me that I’m the strongest person they know. Little do they know that I’m probably one of the most fragile people they know. I look at my family and often worry about what I would do if anything happen to one of them. Life events and things that have happened in the past may appear to have made me stronger but in reality they have broken me. Just when I thought that I had it all figured out, I know nothing. I don’t think most people really know how fragile life is. Life as you know it can be snubbed out in the blink of an eye. You work, you plan, you save and lay out the best life plans. It can all be gone in a heartbeat.

Justin and Daniela are starting to know what childhood is supposed to really be about. Since Cody’s passing they are starting to get more involved in school and after school activities. They are both playing basketball at the Boys and Girls Club. We are able to have a bit more structure in their lives. I’m sure they would give it all up if they could have Cody back in their lives. Justin goes to a tutor after school and is getting the best grades that he has ever received. I’m now butting heads with Daniela. She is a very head strong girl. She is very independent but also very insecure. They both have years to make up for. You really don’t know how much your child develops socially in the early years. Just playing with friends and school mates means so much. It teaches them how to interact with others their age. It teaches them what to say and not to say to others. Due to the stress involved in Cody’s battle with cancer, Diane and I both were guilty of not saying or reacting properly in certain situations. Justin and Daniela have payed for that stress. We owe them for so much lost time. While going through such a crisis we just didn’t have it.

This is already turning out to be a tough week. The darkness has already set in over Diane and me. These bad times seem to hit her much more than they do me. Where I get quiet and just want to be alone, she cries and mourns all over again. This one year anniversary will conclude a year of firsts for us. Our first family birthdays, holidays and just old daily life days… Although the day to day pain has eased a little it still hurts more than you could know. More unless you too have lost your child before their time.

Diane and I continue to promote Cody’s Crew and neuroblastoma awareness. She has been doing a wonderful job finding the best people and materials for our Cody’s Crew gear. Right now it isn’t about making a huge profit but getting the word out. We want people from all over to recognize the Cody’s Crew logo. I’m now known as the “flag guy”. I’ve done a couple full and half marathons with the flag and people have told me that they have seen the flag before. While running I get questions and kudos while carrying it. Running a marathon is quite a task. Running a marathon with a flag is even harder. I would carry 10,000 flags if it could bring my Cody back..

I know that it has been a long break since the last post. We have been very busy with our T-shirt sales and the Wine & Art Mixer. Concerning the latter, the Mixer was a complete success. Even with the major snow storms days and weeks leading up to it we had a great event. All those who attended had a wonderful time. Cody’s Crew raised over $1900 with the help of the wonderful artists and our friends and supporters. Thank you all very much.

Up next, our 1^st annual Cody’s Crew Golf Tournament. This event will be held on April 29^th @ Virginia Oaks Golf Club. You can go to our website for more information.

New Cody's Crew Apparel

Our new apparel is now in.. Here is a sample.

Email for size availability.....

A new year, the same mission.

Let me start by saying “Happy New Years”! From me and mine to you and yours, we hope you have a wonderful and prosperous 2010.

This time of the year has never really meant that much to me. The only real change it ever makes in my life is that I must get use to writing a different year on my checks. This year is different. It is a year that will be filled with focus and determination. A year that will be very important to the success of Cody’s Crew. I don’t have to say it but last year was by far the worst of my life. My family and I lost something so precious to us that we questioned our ability to continue to function. But, through the loss of our wonderful child something good was born. The start of Cody’s Crew is our way to show that Cody lives on. This will be his legacy. It is our goal that someday no mother, father, brother or sister will ever lose their special loved one to the beast.

2010 holds endless hope and anticipation that the message “One child lost to neuroblastoma, is one child too many!” grows into a household phrase. With your help in spreading the word people will come to know about “The Beast”. They will come to know what terrible treatments and pain these little children must endure before having their lives blown out like a newly lit candle. With your help in spreading the word of Cody’s Crew, children like Cody will grow up to become doctors, teachers, presidents, scientists, engineers or mommies and daddies. These children deserve that chance. This world is a lesser place without them having that chance. My wife and I will continue this fight in hopes that someday it will not be needed.

How can you help? Well, there are many ways.

· First of which, you can spread the word. Tell people about Cody and the thousands of children like him.

· Tell people about neuroblastoma and the fact that there is NO CURE.

· Post links to our blog and the Cody’s Crew website on your blog, Facebook or website.

· Encourage friends, family, co-workers, employers and local businesses to donate to Cody’s Crew.

· If you know a celebrity or public personality, ask them if they would help us spread the word. We are still searching that “front person” that people know and recognize that will get the public’s attention.

· If you don’t live near Northern Virginia and can’t attend any of our events you can plan one of your own. A yard sale, a golf tournament, a bake sale or a lemonade and cookie stand. There are many ideas and we would be happy to hear from you if you have something different.

Cody’s Crew is as “grass roots” as it gets. We have no major corporate backing “yet”. We are less than one year old. We are very much like the children we are trying to help. We are young and weak and need love and nurturing to help us grow. Please don’t read this post and think that all is well and we are fine. Please use this New Year as a reason to help. You can do something! I know that you care because you took the time to come read this post. Some of you check my blog religiously. Some of you have followed Cody’s journey for years. Please, don’t just stand by. We need your help for Cody’s Crew to grow into all it can be.

"Reality"

This picture was taken in September of 2008. The 3 beautiful children in the picture are from left to right are Jenna Mussolini, Owen Lea and our man Cody Johnson. It was Owen's 7th birthday that was being celebrated at Memorial Sloan Kettering in New York. Like most of these children Owen had to celebrate his big day in between treatments. They loved every chance they could get to just be kids. Look at their happy faces..

Now for the reality behind this picture. All 3 of these children are now angels. Jenna passed away just 4 months after this picture was taken. Owen passed away this past summer. Our Cody passed away in March. This is not just a coincidence, it is reality for the kids with neuroblastoma.

This reality for parents like us!