What to say......

I know that it has been a while since posting. I would like to get this blog published. That way if this site ever goes away we will have all the memories.


There is sadness around our house again. We just buried our 17 year old cat Zac. I'm just about out of words for my children. They have seen more death in the past 4 years than any kid should have to see. I know, I know, it could be so much worse but try telling that to your kids when they have been trough the hell my children have. Zac has been going down hill for the past 6 months but Diane has held on for as long as she could.

Please understand this, I am not a cat person. Zac and I had a mutual respect. He was in Diane's life before me and at times I think he has meant more to her. Despite my lack of affection for Zac my wife and kids loved him. We had buried our old dog Bear about 4 years ago. Cody was there for that. Cody passed just over two years ago. There is no explanation for the passing of a child. For all you out there that have a strong belief in God I respect that. I'm not here to judge you or change your mind. But, unless you have lost a young child that spent 80% of his life fighting the beast you do not have a clue. What the hell could any God be thinking by taking a child away from their family?

Now after months of counseling and trying to get my kids to smile again we say goodbye to another family member. After giving Diane and the kids their time to grieve I started to bury Zac. They are all crushed. Justin told his mother " I do not want anymore pets". She asked why and he said "they will only die and I don't want to be sad anymore".

This morning Daniela sent me a text from her mother's phone. It said, "we are taking Zac to the vet". I knew what that meant because Diane was talking about it yesterday. Well, about 30 minutes later I received another text that said "he's dead". I called her and talked to her for a few minutes and tried to console her.

At lunch I got a call from Diane. She told me how her morning went which was even more of a surprise than I expected. She told me that she was stopped by the police on the way to the vet. The police asked if she knew how fast she was going and Diane said "no". The lady officer told Diane she was going 40 in a 25. First of all, Diane is sitting there with her daughter crying while holding a near lifeless cat. Diane tells her that the cat is dying and she is taking the cat to the vet to have it put down. The officer gave her a ticket and walked away. Where is the compassion?

I'm not done yet. After getting to the vet the tech listens to Zac's heart while Zac expires. They didn't even have time to administer any drugs. Now you ready for the kicker? They charged Diane $150!

My kids are learning so much. Not much of it is good.... Please don't tell me that this is part of "the big plan."

Just wanted to share this with you all...

I know that I don't post much here anymore. That doesn't mean that we have stopped the fight. I do spend most of my time on Facebook now. If you are so inclined you can friend me Mickey Johnson and or Cody's Crew on Facebook.

Here is a link I want to share.

After you view the video please go to this link and vote for "Mickey Johnson".

We did it!!!

Dick's Sporting Goods has selected our story to use in the 2011 Pittsburgh Marathon advertising. We were selected by Facebook friends who voted over the past 3 days... Here are the links to our story and the Dick's Pittsburgh Marathon Facebook page. This is big for Cody's Crew...

Marine Corps Marathon

I know that I often ask all my friends to support my cause and I appreciate everything that you all have done. I will be running the Marine Corps Marathon on Oct. 31st. I have chose to take a Cody's Crew bib and try to raise $500. If you all can help me I would be very appreciative. If you choose to donate, please go to www.codys-crew.org and just add Mickey MCM in the note section. In advance, "Thank you very much!"

Childhood Cancer Awareness Month has come and gone...

Just 3 days out of September (Childhood Cancer Awareness Month) and we have already seen more attention payed to October's cause than all of last month's. If you caught any of the NFL games yesterday you were bombarded with pink. Pink shoes, pink gloves, pink hats, pink jerseys, pink everything. I bet every one of you know what the pink ribbon stands for. I would also venture to say that unless you are a regular here you probably have no idea what color ribbon stands for Childhood Cancer. There is something terribly wrong here.


9-11 was Cody's birthday. Here are a few pictures of our private family time.

We had a small Sponge Bob cake for our little guy

We released some balloons with a few small toys tied to them.

We watched the balloons until they were out of site.

A little quiet time..

Evening with Gucci....

Last week Diane and I went to a Meet and Greet with Gucci. The event was to help benefit Cody's Crew. It was being put on by a local online magazine "Being Fabulous Rocks". It was fun and helped us get the word out.

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.

Great 5K Today...

Our 2nd Annual Cody's Crew 5K was a complete success. We had a wonderful turnout and despite the slight drizzle early on the event went of without a hitch.

For those of you who ran here are the results. http://www.mcrrc.org/racing/2010/Codys_Crew_5K.htm

September is Childhood Cancer Month!

I just want to touch base quickly before I head into work this morning.

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!

Hello Everyone!

I do apologize that I haven't posted for sometime. We are doing as well as can be expected these days. There isn't a day that goes by that we don't think about Cody. We miss him dearly.
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.

Busy week....

What a week! It all started with the Cody's Crew Golf Outing that was held at Virginia Oaks Golf Club on Thursday. A wonderful time was had by all. We had some great gifts that were donated and the weather couldn't have been better. For those of you who follow the Washington Redskins you may know of the Hoggets. Well we had those crazy fellows attend also. Many of those who participated have asked if we were doing this again next year. My answer to that is "how could we not?" We are happy to say that we raised almost $9500.00. Not bad for our first event huh? Thanks to all of you who donated and also to those of you who attended.

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..

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!

Happy New Year!

Hello everyone and Happy New Year. Although we are very glad 2009 is over it is also with great sadness we have to start a new year without our Cody. As expected the Holiday’s have been hard. We did not put up any outdoor lights and only had a Christmas tree with sparse decorations. Our hearts just weren’t in it. Abby told us she would understand if we did not want to put a tree up at all and that it would be okay. Justin and Abby are at an age where they are suspect of Santa so much of the excitement and anticipation of the season was missing. Santa, however, was Cody’s favorite magical friend and the one holiday he loved most. Even back in February he was seeing toy commercials and saying to us ‘Look, Look, I want that for Christmas’! It was very hard picking out presents for Justin who always put toys on his list that he and Cody could play with together.

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:

Dear Cody,

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.

With Love,
Abby


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.

Enduring Love....

This is a story written by a very close friend of ours. The story was written for Runners World Magazine which for some reason chose not to publish it... Monica did a great job on it.. Thanks Moon!

Enduring Love

It is early morning in Manassas, Virginia. The sky to the east is just showing the first colors of purple and red. Mickey Johnson, 47, makes his way to the end of the driveway, ready to set off on a morning run. Today holds 6 miles, part of his marathon training regimen. He reaches the bottom of the driveway and looks down a small hill. It’s the hill his 3 children would ascend on their trip home from the bus stop. Justin and Daniela, his two older kids, would be ahead, bickering, laughing, their packs bouncing on their backs with the rhythm of their stops. Cody would be behind them. He was quiet, and air of calm around this normally frenetic child. Mick would wonder if it was the work going up the hill, the weight of the pack, or just the fatigue from a full day of school. Mickey smells the air. He closes his eyes and takes a deep breath trying to catch a familiar scent.

It’s August 13th, 2009 and 12 friends who have never met meet for time at a Forum Event. All of these runners post on the Masters Forum of the Runners World On-Line Discussion Boards. While they normally share daily workouts, training tips, and race results on line, this “FE” gives them the rare chance to gather and share a meal before a race. They all agree that the Masters Forum is a special place, that it fosters incredible friendship. They have a digital community of runners from different walks of life whose foundation for acquaintance are the common bricks of running, cemented by mortar of dedication and shared sacrifice. They tend to be over 40, but the Masters Forum attracts those younger than, those who are looking for the sweet, grounded advice of those who have been around the block or the track more than a few times. There is a sense not only of kinship, but that they have each others back: a DNF is met with words of encouragement, a PR is a group celebration. There are even non-running topics discussed and shared: a new job, a child’s graduation, a move to a new city.

The organizer of this group, Scott Reiss, lives in the events home state. The others have travelled from a confetti of locales - Indiana, Virginia, New York , Maryland,– and will run multiple legs and double digit miles in the ‘100 on 100 Heart of Vermont Relay’ that rolls through the Green mountains from the Trapp Family Lodge one hundred miles to Ludlow, VT.

The next day, race day, is forecasted to be warm and sunny. These newly minted friends eat, laugh, and share stories. They review details for the next day’s race, fret about the weather, terrain, clothing, and food. This is what runners do: they sweat the details as much as the miles. However - unlike other races - they are here not to chase a PR or win an age group. They are here to honor a child they have never met: Cody Johnson.

Cody Johnson was diagnosed with stage 4 neuroblastoma 3 days before his 2nd birthday. He was born on the first anniversary of the 9-11 terror attacks and grew to be a feisty, spirit-filled toddler. Neuroblastoma is an “orphan” cancer: it occurs almost exclusively in children under the age of 10 and as such doesn’t benefit from research done on cancers such as leukemia and lymphoma that strike both adult and child populations. The average age of a child diagnosed with Lymphoma is 17 months, so young the child can’t articulate their pain. Like Cody’s case, 70% are not diagnosed until the disease has spread.

Cody was admitted to Georgetown Hospital for 10 days of baseline testing. His radiology scans lit up, the cancer present in every part of his body. A round of high-dose chemo was ordered and required Cody to be in the Pediatric Intensive Care Unit (PICU) for 31 days where Mickey slept every night in a chair next to Cody’s bed. Cody suffered from the treatment: he vomited a pitcher full of blood from cancer-infected adenoids. He suffered fevers and side effects from the toxic chemicals. Surgery was required to remove the remains of lung and kidney tumors, as well as his adrenal gland and surrounding lymph nodes. The final step in his 4 month treatment – during which he rarely was home for more than 24 hours at a time – was a stem-cell transplant. The transplant had complications - Cody had a reaction to one of the transplant drugs. His lungs filled with blood and he suffered congestive heart failure and partial kidney failure. His oxygen intake dropped to 30%; doctors worked through the night to save him. A priest was called to the floor to be on stand by. His condition was minute-to- minute for 9 frightening days. Mickey and his wife, Diane, kept vigil over their fragile son, praying for a miracle, praying for their 2- year- old to endure and pull through. He survived those harrowing days and greeted the nurses treating him by throwing anything he could reach at them.

The 100 –on-100 was not the first time the RWOL masters had come together to support Cody. In April, Bill Allen – a member of the 2009 US World 24-Hour Run Team - put out a call to the Masters Forum and organized a team for the Virginia 24 hour Run for Cancer - 24 hour Ultra and Relay. Bill had been deeply moved by Cody’s struggle and wanted to support the Johnson family. He found the race and was committed to participating, despite it being a few short weeks before the World Championships in Italy. Ten ROWL Masters made the trek – from Pennsylvania, Delaware, Maryland, Mississippi, New Jersey, and Virginia – to run for Cody. Bill made a flag that each would carry.

One participant, Shannon McGinn, 33, drove from Rahway, NJ to run in Virginia. Diagnosed at 29 with breast cancer, she survived and took up the sport of running. This race is special because she is raising money to fight the illness that has so personally touched her. In doing so, she abandons her bib for the 113th Boston Marathon to be contested the Monday after this relay. It was to be her first Boston, but it matters little to her: she understands all too clearly the fight for life against this disease; Boston can wait.

Nine of the ten participants complete 50 miles during the 24-hour relay and each carry the “Cody’s Crew” flag. During the dark hours on the trail, Mickey thinks often of the pain his young boy endured; these miles become spiritual for him, an act of contrition, perhaps, that parents feel for not being able to spare their children from certain pain. Cody’s Beach Bound Crew of Pirates raises $1200 for Neuroblastoma research.

Cody’s first treatment caused agony beyond imagination. While he’d learned to walk before the disease struck, he needed to re-learn the skill – twice – due to muscle atrophy caused by the cancer treatments. When Cody finished his treatments, Mickey looked at his own physical health and found it wanting. He took up running and put his sights on running the Richmond Marathon in November, 2006. Race day was unseasonably warm and as he struggled with cramps and fatigue over the last half of the course, he thought of his son – his image on his t-shirt and the words “Cody is My Reason” – and the pain he had endured. He thought of the treatments that would cause Cody’s lips to blister and peel, the mucositis that resulted in the degeneration of the lining of Cody’s mouth. Drinking milk from a bottle felt like drinking shards of glass. He thought of Cody’s first words, and how they related to the hospital, the drugs, his treatments. Mickey knew that his own fatigue and cramps were nothing, that the discomfort was temporary. He knew when his pain would end, that whatever agony he was feeling was but a small slice of what Cody had. Cody had survived his first brush with cancer; Mickey would finish this race.

Race day in Vermont dawns cool but the sun will quickly heat up the course. Each team member will carry the Cody’s Crew flag during the relay. Eric Cheung of New York City is the lead-off runner for Team 1 of Cody’s Crew. He’d met Mickey at a Masters FE at the 2007 Philadelphia Marathon, and found him to be as ebullient and warm as the man on the boards. Mickey believed with all his heart that Cody was cured, but his son’s battle for health was a constant, the disease has a frighteningly high rate of recurrence. Eric could feel this weight on Mickey. “When the 100-on-100 teams were recruiting runners, I felt a strong urge to do something, anything to help.”

Somehow, this 6-year-old boy has infected these runners with his toughness and determination. During each of the 3 legs of this hundred mile relay, they’ll think often of Cody, this boy they know but never met. They feel a common mission, a common a purpose. None can put a finger on it; perhaps it is that Mickey could have been any of them, that Cody could have been any of their sons. Tobey Hobbes of Purdue, Indiana would later reflect “The emotional energy and sense of purpose from these other 11 people was so contagious that you couldn’t help feeling like we were all one big family.”

When Karen Faber, 42, of Bowie Maryland, signed up, she knew nothing about Cody or Cody’s Crew. She stumbled upon a thread in the RWOL Masters Forum looking for a runner to fill in for a participant who had withdrawn. “At the time I knew very little about Cody or Mickey or neuroblastoma. But I liked to run and I wanted to see Vermont.” During her preparations for the race she frequented the Masters forum more often. “I started learning more about Cody… I read about the 24 hour relay in Hampton, and I found out that there was this big, compassionate group of runners out there…”

It is 2 days before Thanksgiving, 2007. Cody is cranky, his belly is hurting. He’s a typical 5- year- old: he’s started kindergarten, he loves his teachers, he tests the rules. He gets tired and cranky at the end of the day but he loves getting on that bus with his siblings Justin and Daniela. Mickey and Diane take him to the doctor thinking he has nothing more than a virus. But the beast is back, Cody has relapsed: Scans show an enormous tumor on his liver. One of the top Neuroblastoma surgeons at Memorial Sloan Kettering declares the tumor inoperable. Mick and Diane refuse to surrender. They find a surgeon at Georgetown University hospital who will perform an 85% liver resection. Before the surgery, Cody goes through additional rounds of chemo to shrink the tumor. Santa visits the children’s Oncology unit at Georgetown University hospital. Mickey is there and uncertain how Cody will react; he has been in a foul mood all morning. Cody is angry; his world has been upended yet again. He’s had to withdraw from his beloved kindergarten. He has to have the toxic chemicals with their nausea and hair loss infused in his veins. He wants to be home with his family. He submits to the treatment but has tantrums in between: he is incensed at this intrusion in his life. Cody sees the bearded man in red and hesitantly approaches him, then wraps his arms around him and hugs him for nearly half a minute. A Washington Post reporter is on hand to capture the moment.

Elizabeth Scott, 44, a native New Yorker, has been an active fundraiser for cancer research for years. “You start feeling powerless and that there’s absolutely nothing you can do to stop the march of this beast.” She relishes the opportunity to raise money to combat the disease, and with good reason: it has claimed nearly the entire side of her father’s family: Her grandmother, uncle, and father all perished from colon cancer. Her sister has fought breast cancer. A cousin had lung cancer, another is fighting an aggressive brain tumor. “Running races for cancer research funding has given me a bit of peace, and a feeling of control over this disease.”

Rick Knuth from Fort Wayne, Indiana competes despite a nagging hip injury. A devout Catholic, he feels participating in the event is a spiritual call, to give something. “I have been blessed with three healthy daughters and just can’t imagine how difficult it must have been for Mickey and Diane during Cody’s illness. Nobody should have to go through that.” During the difficult parts of the day’s racing he falls back on traditional Catholic prayers, saying countless Hail Marys and Our Fathers.

Cody endures additional cycles of chemotherapy and radiation during that winter and spring. Cody never complains about going to the hospital, but he doesn’t always willingly submit to the treatments. He misses kindergarten, and is thrilled when he is able to attend his class’ Valentines Day party. He’s excited to be going back and when he arrives Cody had hugs for everyone: the secretaries, the school nurse, even the principal. He goes to his classroom and hugs both of his teachers. Back at the hospital, Cody is Jekyll and Hyde with the nurses, charming one minute, angry the next. Mickey worries at how Cody lashes out, at how angry his little boy can be. In hindsight he realizes Cody was fighting back the only way he knew how. He has such spirit – he enters a room and takes it over with his smile, his laugh, his devilish charm.

The day goes from cool to very warm with temperatures reaching the 90’s. The course is very hilly and there are stretches where there is no relief from the sun. The relay runners feel the fatigue and discomfort from the course and heat. They carry Cody’s flag and all think of him during the tough stretches. Elizabeth is suffering from nausea, as is Mickey. Despite his second leg of the relay being relatively flat, the lack of shade is crippling. “Although it was relatively flat the heat just sucked the life right out of me.” The thought of Cody and all he had gone through kept me from walking during this leg. After he finishes this part of the relay he finds an ice cold stream and jumps in. He thinks about Cody’s favorite place, the beach.

Over the summer, the Johnson’s take Cody on a trip to Ocean City, Maryland,. The beach is Cody’s favorite place and it is a wonderful chance to be together without the intrusion of hospitals and doctors. The trip is a respite for the marathon treatments to come. In September, the Johnson’s take Cody to Memorial Sloan Kettering Hospital in NYC to undergo 3F8 antibody treatments. These treatments are designed to attack any remaining cancer cells in Cody’s body and are the best protocol available to fight neuroblastoma. It is a painful process, each infusion causing more and more pain, and morphine rescues are often needed during the 20 minute treatments. Cody is in MSK for 2 weeks and passes his 6th birthday in the hospital. The doctors are hopeful: the results of the tests show Cody is tolerating the treatments well. He returns to MSK in October, and again in November to undergo additional cycles. It has been a year since his cancer has returned and they feel a corner has been turned, that Cody is getting better.

While the afternoon conditions are tough, Cody’s Crew is smiling: they are having so much fun. They joke about not making unscheduled stops at the Ben and Jerry’s ice cream factory that they will pass. They crew for each other, provide water for their runners on the course. Other runners question Cody’s Crew about the flag, and they are happy to spread the word, to share the mission. Later in the day, they are cheered along the course by other participants who have heard of their cause. They feel like running evangelists, spreading the gospel of Cody.

The Johnson’s hope is short-lived. It is December, 2008 and they are looking forward to spending the holidays together as a family. Just before Christmas, Mickey takes Cody to Georgetown University hospital for some tests. The whites of Cody’s eyes have developed some yellowing and the tests indicate increased bilirubin: something is going on with Cody’s liver. The doctors conclude that it is inflamed due to a virus, and work to get it stabilized. Just after Christmas, Cody begins to limp. He’d hurt his leg the last time he had been to New York City and this same leg is giving him trouble. Mickey and Diane pray it is related to the injury and the doctor thinks it may very well be. However, on December 30, 2008, a scan shows the presence of a bone lesion: the beast has returned.

The sun sets on the runners in Vermont. They have each started the third and final leg of the relay; they are closing in on the finish line. Teams 1 and 2 of Cody’s Crew run the third leg together. Their legs are sore and tired from the miles. Their feet hurt and the heat of the day has sapped much of their energy but the cooling air and the colors of dusk lift their spirits. They wear reflective vests, head lamps, reflective arm and leg bands. They see the faintly glowing figures of other runners. It is a spiritual, - almost holy - time for them.

Time. Runners seem to be centered on it, measuring miles and kilometers run in hours, minutes, seconds. Marathoners trying to qualify for Boston know all too well the how long one second can be the difference between standing on the starting line and sitting at home on Patriots day. But this evening in Vermont, the time it takes to run the course has ceased to have meaning. While these runners would normally want to speed through the miles as fast as possible – minimizing time - they instead savor it on this night. They remember how Cody loved his older brother Justin, and how his one wish was to be ten years old like him. That’s all Cody wanted, just a little more time. They have a new clarity of just how precious it is; Cody’s journey has given them that.

The presence of the cancer so soon after the 3F8 treatments is not good news. More lesions are found Cody is scheduled for chemo and radiation to try and knock it out fast. However, the chemo can’t be administered until his liver resumes normal functioning. The doctors wait as long as possible, and then have to settle on half doses of chemo to prevent further damaging his liver. They are balancing the delicate scales of time: they need time for his liver to heal, but every day they wait is a day the cancer grows. Cody starts treatment at the end of January and is home in time to watch his beloved Pittsburgh Steelers play in the Super Bowl. Photos of Cody show him smiling wide, excited. But one can’t help but notice his yellowed skin. It’s incongruous, to see the beautiful smile on this evidently ill child. His liver numbers continue to deteriorate and the doctors have to suspend the chemo.

Bill Barnes of Boston runs the final stretch of the relay with Mickey. They will carry the Cody’s Crew flags over the finish line. It is dark out and they chat amiably about the relay, their previous runs that day, how they felt. The air is so cool they can see their breath. They get very quiet. At that moment, Bill experiences his first ‘runners high’. “It was extremely dark and our senses of sound, scent, and touch took over from our sense of sight. We ran in silence except for the perfectly cadenced footsteps and breaths… We were, simply, two runners doing what we love to do.”

2 weeks later Cody’s stomach begins to hurt. When the Johnsons call the doctor, she tells them to come in the next day. This gives them pause: why wait, why not take him in now? She tells them gently that it is most likely the cancer, that it has spread. Scans reveal cancer covering 50% of Cody’s lungs. There are new spots on his liver in addition to the lesions on his leg; the progression of the disease is frighteningly fast. They cease all treatment. Mickey and Diane go into ‘Memory Making Overdrive’. They quickly plan a final trip to Florida, to get Cody back to his beloved beach. The trip is hard, Cody is ill and irritable. His skin is deeply yellow and people stare at him. He is quiet and tired during most of the time there; the cancer is wearing him down. They play miniature golf and he sits after each shot. He is only well enough to go to the beach one afternoon. They return home on March 1st and take Cody to Georgetown University Hospital for an evaluation. The cancer is rapidly advancing in his lungs and liver. Two weeks earlier Cody’s doctor had thought he might have 3 months left. She now says he has a week, perhaps two. His breathing is becoming more labored and he is in continual pain. They take Cody home with a morphine pump and oxygen. He is sleeping when Mickey and Diane have the hardest talk imaginable with Justin and Daniela: they have to tell them their little brother is dying.

Mickey would reflect on this time, this last leg of the relay. “There is nothing like running at night, along a lake, in the pitch dark with a friend and just listening to the sound of your shoes hitting the road.” He and Bill approach the finish line and see the cluster of the other ten members of Cody’s Crew waiting for them. “I can’t explain what I felt or what I remember at that moment. It was all just a blur. I remember all of the Cody’s Crew members hugging each other and the tears were flowing. It was all I had hoped it would be. I know my son was watching me and was very proud of all of us. I felt closer to Cody at that moment than I have since the day we lost him.” They crossed the finish line together, each of them holding their “Cody’s Crew” flag high.

Every runner at one time or another questions his or her reason for being out there, for running mile after mile without regard to weather, fatigue, discomfort. But what makes runners go out of their way to run for a child they’ve never met? It makes you wonder about the nature of friendship, particularly of these friendships. Are they friends because of the running, is the sport the cement that holds these people together? Or is it something more, that the running and the Masters forum were the springboard for all of this? They started out with a common denominator of running, but at the end it wasn’t about the running; it was about Cody, he was their reason.

Kerry Lambert, also of Vermont later reflects on the weekend. “Cody deserves more…he deserves a legacy, a positive legacy. If our run and this race can raise funds and awareness that get us even a smidgeon closer to helping another child with this horrid disease, then sign me up. Make me a shirt, give me the flag, point me toward the race. I’ll run because I can…and because Cody can’t.”

Karen Faber – who joined the relay so she could see Vermont – left knowing she had been there for something much more meaningful than a weekend sightseeing trip. “I get a little choked up when I think about the weekend… I realized that I wasn’t just there to run a few miles in Vermont, I was there for something much bigger. I was there for Cody. I was there for an amazing kid that even after his death is doing great things through his parents and his dad’s running.”

Despite his tremendous loss, Mickey is overwhelmed by the generosity of both spirit and body of these people. “Runners are not afraid to work very hard for something they believe in. Where many people would just write a check from their check book to help, our team members did that plus wrote checks with their sweat, tears and pain.” He is humbled by their gesture. He intends to continue his fight and while his intention was to raise funds for a cure for neuroblastoma, he also finds he has collected willing volunteers who spread his mission a step, a block, a mile at a time. They are, after all, runners.

Mickey loved the smell of Cody’s hair, loved the way it felt on his face when Cody would sit on his lap. He feels Cody with him, in his aching heart. He misses him so much. Mickey opens his eyes. He takes one last look down the hill; Justin and Daniela will be headed down to the bus later that morning. He turns and starts out on his morning run. Cody is his reason.

Cody Johnson died on March 6th, 2009. He was 6 years old.

Donations to find a cure Neuroblastoma may be made to www.codys-crew.org

Good morning all!!!

Just wanted to write a few lines this morning. I've been thinking of Cody all morning and my heart is kinda heavy. We always miss him. His presence is all around our house. We try hard to keep reminders of him just the way they were when he was here. Some things have to change, there is no getting around it.
I had a dream of Cody last night. It wasn't long or anything that was out of the norm. It was just Cody, and I'll take it.... But this morning while sitting at the bottom of the driveway with Justin waiting for his bus I couldn't stop thinking of Cody. It wasn't the usual thoughts of missing him but it was guilt. For some reason I have this terrible feeling of guilt because of all that Cody had to go through. His whole short life was filled with pain and suffering. Up until his last breath he was fighting pain. It hurts my heart..
The coming days of Christmas are going to be very hard on our whole family, Diane especially.

Please pray for our family to get through this season...



For those of you who haven't heard yet, Shannon McGinn had a very successful 100 mile race. She led the race by 4 or 5 miles until around mile 80 when she started having stomach issues and dropped back. She told me that it was the thought of Cody and Cody's Crew that kept her going. She ended up finishing 2nd. We are very proud of her and thank God that she is representing Cody's Crew.

Thank you Shannon...

Bid to make a difference..

"On December 12, Shannon McGinn (a 4 year cancer survivor) who happens to be a very good friend of ours will be racing her first 100 mile race, the Ancient Oaks 100 Mile Race for Cody's Crew Foundation. To support our efforts to fight nueroblastoma and to encourage Shannon to not give up when the struggle beings, please consider a making a small donation, i.e. $10.00 which is only $0.10 per mile. Thank you for your help with our fight! If online tracking becomes available, please return here to check this link (http://www.fleastcoastrunners.com/Races-Ancient_Oaks.html) on 12/12 to follow her progress."

Shannon running the NCR marathon this past Saturday.

Shannon has raced in many races with me. She also was on the Cody's Crew of Beach Bound Pirates who ran in Hampton VA this past May. She is a very strong and gifted runner who has battled cancer herself. She has made being the best runner she can be her mission. We are grateful to have her running for Cody's Crew. Please show your support and pledge on her behalf. Go to the Cody's Crew Events page to pledge.

I know, I know......

I am really slacking in the update department.... I do have one excuse though. When I returned from N.Y. at the beginning of the month I came home to a dead PC. Well I just received my new Dell a couple of days ago and I love it. It is so quiet that you can't even tell that is running. My old PC sounded like a jet taking off...

So what has been going on you ask. Well I did finish the New York Marathon on Nov. 1st. It was not the experience that I had hoped for. It turns out that I was just coming down with the flu and my performance suffered for it. I did finish though and I'm glad I did. The trip and race were pretty expensive so I felt that I had to run it. Running through all the boroughs of New York was quite an experience. There people cheering you on all 26.2 miles.. Seeing the ethnic and cultural differences of the neighborhoods as you run through the city was very special. On the down side there were so many runners that I don't remember a time that I was not running beside someone. My final time was 4:39:05. It was the first full marathon that I ran with the Cody's Crew flag and I did it with the flu. Another con of this race was that there were so many people running for causes that I felt as though nobody noticed the Cody's Crew flag.

Fast forward to yesterday the 28th of November. I ran my second marathon in less than a month. I have a theory that it's just easier to stay at this fitness level a run marathons more frequently than doing them twice a year and having to work back up to this level. Yesterday I ran the NCR marathon in Sparks MD. This race is on the other end of the marathon spectrum when it comes to the number of runners which was in the low hundreds. The race takes place on a Rails to Trails path that is flat as it gets. 13.1 miles out and back. The path is a packed gravel path that was very nice to run on. It was a very scenic race that took you through old farms, government woods and fields and over brooks and steams. Every couple miles we crossed roads in near homes and small towns. It was only at these points that we would see spectators. At every one people would cheer for "the flag guy" and Cody's Crew... This is why I carry the flag. As I passed each group of onlookers I would hold the flag a little higher and shout out "Go to Cody's Crew .org". A few times during the race runners asked me about the flag and gave me kudos for carrying the flag the whole race. When running a marathon even carrying a bottle of water is uncomfortable. It is taking time for me to get use to running with the flag but I sure I'll get there. So this race was a little different than New York. I was able to sleep in my own bed the night before and I had no flu symptoms. My fitness level was probably not ideal but I felt pretty good going into the race. I finished this race at 4:14:33 which was about 20 minutes faster than 4 weeks earlier. I think as I get more use to running with the flag my times will drop.

The Johnson's are getting ready for another first. We had our first Thanksgiving without Cody. It was not easy. We had spent the past 4 years at this time of year in the hospital with fevers, getting chemo or traveling to New York for those terrible treatments with our angel. Although not ideal we would gladly take it for the rest of our lives to have our Cody back. In less than a month we'll have another first. Christmas was a special time of year for us. The past few years we really knew how precious those memories would be. Cody like most kids loved Christmas. We miss our little pirate so much...