Saturday, November 13, 2010
Tuesday, October 5, 2010
Monday, October 4, 2010
9-11 was Cody's birthday. Here are a few pictures of our private family time.
Friday, October 1, 2010
For those of you who live local to D.C., we did an interview with ABC about a study that was just released in the New England Journal of Medicine. The interview is going to air on Channel 7 around 5:30. Here is the link to the interview..
Our 5K was a great success again this year. We had a great turnout and it seems that most had a great time. Diane is still doing a tally of the final proceeds I will let you all know how we did.
Sunday, September 26, 2010
For those of you who ran here are the results. http://www.mcrrc.org/racing/2010/Codys_Crew_5K.htm
Wednesday, September 8, 2010
We have been so busy of late. I was able to head up to Burlington Vermont again this year for the 100 on 100 Relay. Once again we had a wonderful time. Many of my running friends from around the country showed up and ran for Cody's Crew. We continue get people's attention while running with the Cody's Crew flag. Although we didn't win the race, we definitely did what we set out to do, "Raise awareness about neuroblastoma."
I met the family down at Great Wolf lodge in Williamsburg, VA when I returned. We spent a few days with the kids before they had to go back to school. We had a very nice time.
I injured my left foot while running up there and have not run since. I'm signed up for a 1/2 marathon on the C&O Canal on Saturday 9-11 which just happens to be Cody's Birthday. Cody would have been 8 this year. Oh how we miss him. He is still our rock.
Tomorrow the 9th I will be speaking at a cancer fund raiser in Washington D.C. The event was inspired by Cody and his story. The event is "Kill the Beast" and will be held at the Midtown Loft, 1219 Connecticut Ave. Washington D.C. The event goes from 5pm to 10pm and I will be speaking at 6pm. For those of you on Facebook, here is the link, "Kill the Beast".
I've got so many things to get done by tomorrow I didn't sleep very well.
The kids started school yesterday. As usual Justin could care less if he ever went back to school. Daniela on the other hand couldn't wait to get back and see her friends. I really hope they both do well this year. This is the second school year for them since Cody's passing so I hope they can progress, become more confident and just be happy children. It's the little things at this point.
Please don't forget our 2nd Annual Cody's Crew 5K that is coming up on September 26th. Go sign up, it is a great time for all and especially the children. "It's all about the kids."
Did you know that September was Childhood Cancer Awareness Month? Don't feel bad, most people don't. We are out to change that!
Tuesday, August 17, 2010
Justin and Daniela will be heading back to school after Labor Day. They have had a very busy summer, going to a couple week long camps. Our whole family is having a hard time adjusting to the loss of Cody.
We are starting to ramp up our plans for our 2nd Annual Cody's Crew 5K on September 26th. We are looking for runners, volunteers and sponsors. Click on the link and check us out.
In two weeks I will be heading up to Vermont again to participate in the Vermont 100 on 100 Relay. We will have 2 teams running for Cody's Crew again this year. We have a wonderful group of runners and friends that have supported us for years. Most of the crew were runners last year. Drop in and check out last years pictures. The race starts at the Trapp Family Lodge "yes, the place where the Sound of Music was filmed". The race finishes at Okemo Mountain. This is a wonderful event and I expect to be doing this one as long as I can run.
We love hearing for you all. Please drop us a line and say "hello".
Cody's Crew is also on Facebook.
I apologize for the rouge videos that show up under our Cody videos. I can't control this without deleting our video. Just poor tech support with the blog.
Tuesday, May 4, 2010
So, after our great day on Thursday we had to try and get a little rest. Friday, Diane and I went to work and put in a full day before heading up to Butler PA. What's in Butler PA you ask. Well, my mother was suppose to get knee replacement surgery a week ago but her EKG tests came back with some questionable results. It turns out that she had some major blockage leading to her heart. After all little convincing she decided that she would have heart surgery. She ended up have double heart bypass on Monday. My sister says that she is stable but still in ICU as of today. I will be heading back up there on Friday to spend the weekend with her.
The Pittsburgh Marathon. It seems as though most of my past race performances have been less than ideal. The Pittsburgh Marathon would be no exception. After doing 40 miles at the Hampton VA 24 Hour Relay just 2 weeks ago my back went out one day later. When I say "it went out", I mean, it went out worse than it ever has. I did not run one step for the 2 weeks leading up to the race. I just really wanted to do this race. I was seeing a chiropractor every other day in those 2 weeks trying to get my back together. By Wednesday I had decided that I was feeling good enough to do the race. Sunday morning the race kicked off and it started to rain almost immediately. I didn't go more than a mile before I had a lady run up to me and ask if I was Mickey. She knows both of my brothers and knows of Cody and my running with the flag. I had a nice little chat with her and we are now friends on Facebook. It wasn't 500 feet later that a guy came up to me and said that he knew me from Runners World. Later in the race I had a guy come up to me and tell me that he ran in Hampton 2 weeks ago and remembered me and the other Cody's Crew runners carrying the flag. This is what makes it all worth it. I want people to look for "the flag guy". I want them to know what Cody's Crew is and stands for. That is why I do all of this. I had others ask me what the flag was for and why I would carry a flag for a whole marathon. Did I mention the rain? The flag was soaked but I never considered stopping. For me, if I'm not carrying that flag, then I might as well stop running. This was one of the hardest marathons that I have ever done. It was an accumulation of many things. Less than desirable training, a hilly course, touchy back and rain. It is now Tuesday and my legs hurt more than ever before. So much so that I'm going to get a massage tomorrow after work. Many of my runner friends swear by them so I think I will give it a try. My final time was 4:43:55. Not my best time that's for sure but my reason for running has changed. Now I don't run for time but to deliver the message of Cody's Crew. I want people to take notice. Take notice that neuroblastoma is killing our children and not enough is being done to stop it.
Thanks for reading..
Friday, April 16, 2010
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.
Wednesday, March 10, 2010
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..
Thursday, March 4, 2010
It’s hard to believe that this Saturday the 6th 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 1st annual Cody’s Crew Golf Tournament. This event will be held on April 29th @ Virginia Oaks Golf Club. You can go to our website for more information.
Wednesday, January 13, 2010
Thursday, January 7, 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.
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!
Saturday, January 2, 2010
We decided to pick out a new ornament every year that Cody would like and hang it on the tree. This year it was a tree frog. We also decided to put letters in Cody’s stocking to let him know what has happened during the time he’s been away. Abby wrote this nice letter:
We have done lots of things without you. It has been so sad here without you. The whole entire school knows that you died. We did not go to school for the rest of the week. At school that day, I wrote a letter hoping that it would get to you. I printed it and gave it to mommy. I went home early because I started to cry A LOT. After you died, we got Zack back from Ginny. We wish you could of saw your cousins too. They all came to your viewing and funeral. It was really, really sad. We had a ceremony for you and now there is a rock dressed up like a pirate and it is in the butterfly garden. But, we also have one rock at home outside by our garden in front of the angle. Then I went to play with Beth. We were both sad after that so then we had a sleepover. I forgot what we did, but I knew it was very fun. We had Cody’s Crew meetings too. We did not go on vacation without you but one day we went to Kings Dominion. We all could tell you wanted to go with us. Chris has not come over a lot now. We planned a walk for you at the Cody’s Crew meetings. I had a tot trot, one mile, and a 5k which stands for 3 miles. There were Nathon’s Ice Cream there too. Chris and his friend Patrick dressed up like a pirate and the little kids got to chase them at the tot trot. We wish you could have been with us on your 7th birthday. I do not know if you got the gormities that we sent up on balloons and we wrote a note with it too.
Although time has eased the ‘raw pain’ of our loss the pain will always be there. It is a world we hope none of you ever find yourselves in. We truly hope you are enjoying the chaos of the season and wish you all good health and happiness in the New Year. We consider you all dear friends and thank you for checking in on us.