Days in the life....

What to say......

2011-04-25T19:47:00.003-04:00

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...

2011-02-20T10:51:00.003-05:00

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!!!

2010-11-13T21:40:00.002-05:00

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

2010-10-05T20:39:00.001-04:00

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...

2010-10-04T19:52:00.005-04:00

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....

2010-10-01T16:08:00.003-04:00

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...

2010-09-26T20:43:00.001-04:00

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!

2010-09-08T04:21:00.002-04:00

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!

2010-08-17T18:00:00.005-04:00

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....

2010-05-04T16:52:00.002-04:00

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..

2010-04-16T08:49:00.002-04:00

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...

2010-03-10T17:28:00.005-05:00

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...

2010-03-04T05:15:00.001-05:00

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

2010-01-13T19:31:00.003-05:00

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

Email for size availability.....

A new year, the same mission.

2010-01-07T05:06:00.010-05:00

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!

2010-01-02T09:28:00.003-05:00

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....

2009-12-17T07:58:00.002-05:00

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!!!

2009-12-16T07:54:00.002-05:00

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..

2009-12-01T19:37:00.005-05:00

"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......

2009-11-29T09:18:00.002-05:00

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...

Cody's Crew Cancun Vacation Contest

2009-11-10T18:41:00.001-05:00

Cody's Crew Foundation is lucky enough to be the recipient of Cancun Vacation Donation. This is for the room but not for airfare. You will be responsible for your own airline tickets.
Here are the details.
Bids start immediately and must be received by midnight Thursday 12th of November. I will announce the winner on Friday the 13th.
Reservations are for:
Mayan Palace Riveria Maya (#6483 rci resort number) Kilometro 48 Carretera Federal Cancun-Playa del Carmen Dates: November 21-28, 2009 The unit is a two bedroom, two bath, partial kitchen, maximum occupancy is 8 people. Here is the website for the unit. Website: http://mayanresorts.com/mayan-palace/riviera-maya/

All bids can be sent to mjohnson@codys-crew.org
Good Luck….

Sorry....

2009-10-19T18:28:00.002-04:00

for the lack of posts. I know that you all continue to care and pray for us. The past few weeks have been a blur. We are planning many things for the future of Cody's Crew. We definitely want to continue the 5K and Tot trot. What a huge success it was and we raised over $12,000.00. The yard sale was another great success. We are blessed with great people who work very hard for this cause. One of the ideas we are kicking around is having a 5 mile or 10K in the spring. This will be more runner oriented. We are talking about having it at one of the local parks so we will not have to run on the road. Another very big idea that is in the very early stages is a Relay Across America. This will be a massive undertaking and we will need some very good sponsorship. It will all hinge on sponsorship and if we can get a major network or the media to take notice. We are all about the attention. We must get the word about neuroblastoma out there.

On a family note. This past weekend was very exciting to say the least. We kept Justin home from school on Friday because he was showing signs of the flu. So, Diane's mother watched Justin at home. I received a call from Diane about 3p.m. and she told me that I need to get home ASAP. Apparently Justin had just finished taking a bath and when he was getting out of the tub he collapsed on the floor. When he fell he hit his head on the tile floor and cracked the back of his head open. We had to rush him to the ER where he had a CT scan and ended up with 6 staples in the back of his head. We were at the ER until 7:30. It reminded me just how much I hate hospitals. Diane said she wished she was still running to Georgetown everyday. For that matter so do I... We miss Cody..

My marathon training has been going pretty well. We are less than two weeks away from the New York Marathon. I will be taking the train up on Halloween and running the next day. Then I will be staying the night after before coming home on the 2nd of November. I'm also pretty sure that I am going to run a marathon in early December. I figure since I'm already trained up I might as well stay at that level of fitness and keep running marathons as long as the opportunities present themselves.

That's about it for now. We are very grateful that you all continue to check in on us. We continue to take life one day at a time. Some days are harder than others. Nobody said it would be easy. God bless you all.

Another Angel...

2009-10-09T22:39:00.003-04:00

It is with a heavy heart that I post today. Pierce Phillips has earned his wings today. Please drop by and pay your respects to his family..

September (Childhood Cancer Awareness Month) has come and gone with little notice. One week later the NFL players are wearing pink in honor of Breast Cancer. What is wrong with this picture? Somebody has got to take notice that our children are dying. Future presidents, lawyers, doctors, mommies and daddies... All gone before their time... Why? Doesn't anyone care?

2009-09-29T19:43:00.007-04:00

5K was a great success!

2009-09-29T19:43:00.006-04:00

We had over 250 people participate in the events this weekend. A great time was had by all. Here are some photos for your viewing pleasure.

9-11-02 was one of the best days of my life.....

2009-09-10T19:38:00.010-04:00

Tomorrow is a day of national mourning. Tomorrow we will be celebrating the life of our baby.

On 9-11-02 the Lord gave us the best gift of all. Cody Darrin Johnson was born on this day. He had to endure pain that few humans have endured.

Cody would be 7 years old today. Happy Birthday big guy!

On 3-6-09 the beast stole our baby from us.

Please join us on our journey to eradicate the beast known as Neuroblastoma. Children are dying every day to this terrible disease. Go to Cody's Crew.org and sign up for the Cody's Crew 5K. We are raising money for research and treatment of the beast. Go and sign up for our event.

Soon to be another angel....

2009-09-03T08:43:00.002-04:00

If it is not painfully obvious to you by now that we need to find a cure for neuroblastoma then I don't know what it will take.

Meet Pierce. His journey will soon be coming to an end. His mother and father now have to face the most terrible situation that any parent can face. Please drop in and give his family a few words of support....

Also drop by Cody's Crew and make a donation.. We must stop this terrible disease...

Time to write again...

2009-08-26T20:01:00.004-04:00

This is one of those days, one of those days that is full of emotions. I came home a little after 5 p.m. and was surprised to see Diane's car already in the driveway. I usually get home before her so it kinda caught me off guard. When I walked through the door I asked her why she was home already. She told me she had a bad day. She had been thinking of Cody since last night. She watched a video of Cody and Justin playing video games. The video was recorded a month before Cody passed. She said that a few times he let out one of his deep laughs. The kinda laugh that is contagious and makes others laugh. She longs for his voice, his smile and his smell. Although it's been over six months it is still very hard.

Now you might think that this all had something to do with Owen's passing today. It did not. She didn't know that Owen passed until I told her this evening. Our hearts really to out to Owen's family. Even though you know this day is coming, there is no way to prepare for something like this. As difficult as it is going to be I will be heading to Fredricksburg for Owen's viewing on Sunday. This is just something that needs to be done until a cure is found.

Diane and I are staying very active with the foundation. We have a great group of people who are helping us get things moving. We are hoping for a very successful event. We know with time and hard work this foundation will become a great success. The success of this foundation will only be measured by advances in neuroblastoma research. Diane has written a wonderful letter to Mrs. Obama in hopes that she could possibly come to our event. We know the odds are not good that such a thing will happen but you have to try right? With this being a down day, Diane needed reassurance that we are going to do well. I want her to understand that it takes time for an organization such as this to get rolling. The more times people hear of neuroblastoma and hear of Cody's Crew Foundation the more we will succeed. We will succeed when one day a doctor or scientist discovers that magic treatment that brings neuroblastoma to an end.

The Vermont 100 Mile Relay was a huge success. There is even a few Cody's Crew photos on their site. It was so much fun and great to have a chance to meet many people whom I have known on the Internet for years but hadn't met in person. We are already planning next year. It is wonderful that so many people want to help. Runners can help by running. Speaking of running, I will be running again this weekend at the Annapolis 10 Miler. I will be carrying the Cody's Crew Flag. Then Labor Day weekend I will be carrying the flag at the Virginia Beach 1/2 Marathon. In October the flag will fly at the Army 10 Miler and then again in New York City during the New York Marathon November 1st. This is one of the best ways I can get the word out.

If any of you out there know somebody that is in the public spotlight that wants to do something good then please point them in our direction. We need all the help we can get. Children like Cody and Owen need all the help they can get...

Another angel...

2009-08-26T11:18:00.004-04:00

Owen is now playing with Cody... Drop in and give his family a few words of comfort...

5 Days to go!!!!!

2009-08-10T18:12:00.008-04:00

On Friday me and 11 of my close Runners World friends will be flying into Vermont to participate in the Vermont 100 on 100 Relay. This is a big event for Cody's Crew and I get more excited every minute. Of the 11 other people I have only met 2 of them. Our members are traveling from all over the country to participate in this event. They are spending their own money for travel, lodging and food. For that I am very grateful. These events are wonderful. Most of these people I have known for years but have never met in person. I will be sure to take plenty of pictures and post them here. If you have the desire you can contribute to our team by going to the Cody's Crew website and click the donate button. Just add a line in the note section stating that your donation is for the race... Any amount is appreciated.

God Bless,
Mickey

We love and miss you Cody!

Good Morning All!!!

2009-08-04T06:50:00.002-04:00

I just wanted to make a quick post this morning before I have to go to class. I found out last night that we are soon going to lose another beautiful child to the beast. Owen Lea, who lives in Maryland and was on the first return flight back from New York that we took with Cody. He has battled the beast for 6 years and his family is about to go through HELL. As Diane says, "we would gladly take the daily trips to Georgetown and the sleepless nights if we could still have our boy."

Please pray for Owen and his family. Here is his website.

We love and miss you Cody!!!

Hello out there!!!!

2009-07-24T17:11:00.002-04:00

I thought that I would update what is happening in our lives.

Well, both Justin and Daniela were at camp all week. Daniela came home today and Justin returns tomorrow. Daniela was at a camp down in Leonardtown MD. Justin was on the Chesapeake Bay north of Baltimore.

Diane's brother and his family are visiting from Japan. They will be here for 3 weeks. We are all sitting in the family room watching a movie.

It's hard to believe but school will be starting again in a month. This spring started out great. We were getting rain every other day and the grass was green. Now, we are watching our beautiful grass turn brown and we pray for rain everyday.

I have been running more and more and I'm into my 3rd week of my 18 week marathon training period. I have a very busy racing schedule coming up. It all kicks off in 3 weeks up in Vermont. I will be running the Vermont 100 Mile Relay with 11 of my close running friends. The total of 12 runners make up 2 Cody's Crew teams that are going to run. I'm really looking forward to it. Two weeks after that I'm running in the Annapolis 10 miler. This a pretty hilly race but it is nice because it finishes at the Navy Football stadium in Annapolis. Labor Day weekend I head to Virginia Beach for the Rock and Roll 1/2 marathon. I've done this race twice before and it is one of my favorites. After I head to D.C. for the Army 10 miler. This is a race I've done many times. I really don't like it as much as Annapolis but I will be with good friends and that makes it all worth it... Then comes the big one. November 1st is the New York Marathon.. This is a race that is on my top 10 to-run list. Enough about that...

Now for the big announcement. September 26th is the First Annual Cody's Crew 5K, Miler and Tot Trot. Go to our website and click on the tab for the 5K, Mile and Tot Trot. I have all the forms that you may need. If you want to be a sponsor, participant or volunteer. We are planning a special day. Please drop by and check it out...

Everyday that passes is a little less painful but it doesn't make us miss Cody any less. I picked the picture that is now on this blog as the silhouette for the race shirt. It is perfect.

Thank you for stopping by. I will definitely try to do a better job of posting. It is very hard to write things that I think you will all want to read or care about.

God Bless!

We are still here....

2009-07-06T15:39:00.002-04:00

Just thought that I would drop a few lines on you all. We had a pretty busy 4th. I rented a log splitter so I could try and get that tree split up and stacked. Thank God for Chris and his friend Kenin. They came by on Friday and helped me split all the logs. That was a huge job even with 3 people. We have enough wood to last us 5 years or more.

Saturday we all took a trip up to Shenandoah River to do a little canoeing. Well, we thought it was going to be a little canoeing but it turned out to be over 6 1/2 hour canoe trip. You have no idea how sore our arms are.

We are working out the final details of our inaugural Cody's Crew 5K run and Tot Trot. I will be posting the information here and on the website. You will be able to register for the race online very soon. We are very excited about this event and we think it is going to be a huge success.

Thank all of you for you continued support and prayers for my family. As hard as it is we must keep going. We miss our son and brother everyday. This is a year of firsts and Saturday was the first 4th of July without Cody. He was missed more than you could know.

A week to enjoy or endure?

2009-06-23T07:39:00.004-04:00

I'm not sure if you noticed a change in writing style but the "water bottle" post was Diane's. I was very happy that she wanted to post it. Although she is still hurting very much she is showing signs of improvement.

We took the kids down to Camp Carefree in North Carolina over the weekend. We will go pick them up this weekend. The house is very quite now. We can just vegetate when we get home from work and not have to run around or deal with the constant bickering. But if there is one thing we have learned over the past three months it's that you should take it all in. You should drink every last drop of their childhood years. As we have learned, they can be snatched from you at anytime. Before you know it they are grown and gone. As we were standing in line to sign the kids in I heard the parents in front of us and behind us saying "I can't wait to drop you guys off." They were talking to their kids of course. We have all said such things many times but it made me think, do we really mean what we say? I think it just came across the wrong way. I think "we need a little break sounds better."

We left early Saturday to drop the kids off Sunday. The kids like staying at hotels so we thought that it would be nice. Saturday afternoon we stopped in Mt. Airy N.C. to do something different. We took the kids and went zip-lining. It was great. We thought that Justin would be a little apprehensive but he did very well. Daniela on the other hand was the one who wasn't quite sure about the task at hand. Despite her hesitation she took the plunge and after the second ride she was arguing with Justin to go first... It was a great time...

Cody's Crew Foundation fund raising is in full swing now. We have had a "Texas Hold'em Poker Night" here in Northern Virginia. We did very well for our first event. There is a community Bingo Night on the docket for the coming weeks. We also have plans for a Cody's Crew Yard sale. This is something that we have put some thought into. You do not have to live in Virginia to participate. We will be recruiting Crew members to host Cody's Crew Yard Sales all over the county. We have not determined the date yet but if you are interested in participating please email me at mjohnson@codys-crew.org.

Our first big event is the 1st Annual Cody's Crew 5K run/walk and Tot Trot this fall. It's scheduled for September 26th at Osbourn Park High School in Manassas. I will be setting a page up on our website for sign up and more information. This is first big event and we would love to have a great turn out.

We are still kicken and trying to keep moving. Cody still remains our strength and our motivation. His loss has rocked our world but it has also given us a goal. We don't want to see anyone go through what we have gone through.

"Fighting the Bad Bug"
Cody Johnson

The water bottle.....

2009-06-16T22:01:00.003-04:00

A bottle of water sits atop my dresser. It is the water bottle that Cody so desperately tried to sip just hours before his death. He was confusing the oxygen mask being held in front of him with the straw that had been placed in the bottle. The lack of oxygen had left him disoriented. Being the strong fighter that he was he struggled to sit up with all his might and take a drink. The mask had left his lips chapped and his mouth dry. His little body was trying to quench his thirst. Even is his dire condition his sheer will gave him strength.

Each night before bed I look at the water bottle. It has been evaporating little by little each day. It breaks my heart to see it go as I want nothing more than for it to remain just as it was, to forever hold onto it. The evaporation is creating an empty space, a space that will never be full again.

A family, a life, a heart, and a water bottle......

We so miss our baby.

A quick note....

2009-06-07T07:33:00.004-04:00

I'm getting ready to go our for my long run this morning. But I know many of you have been checking in to see pictures from the Balloon Release yesterday. I did upload this small video and will give you a chance to watch it until I post the pictures.

Cody's Memorial Balloon Release

Here is another very nice video.

Cody's Memorial Balloon Release

What's new at Cody's Crew?

2009-05-29T20:10:00.003-04:00

We have a number of new changes and events at our Cody's Crew website.

If you go to our Upcoming Events page you will see that we have a Cody Johnson Memorial Ceremony scheduled for June 6th. It will be held at Bennett Elementary School in Manassas VA. There will be a balloon release at 11:00 am. You can purchase a balloon at 10:30 am at the school or go to the Shell City page and purchase balloons there. All proceeds will go to Cody's Crew Foundation. This will be a very special ceremony so if you can make it we look forward to seing you. If you can't I hope you will take the time to purchase a balloon on our site.

Many of you submitted logo entries for our contest. Many of you voted for your favorite. Now we are having another contest. We are asking our Crew for ideas for our official Cody's Crew Slogan. You can submit your entry on our Slogan Contest page. Get out that pen and paper and get busy...

We also have the new Cody's Crew wristebands on sale also. They are $2.50 each. For those of you who purchased them last year these are a little different. They are of coarse camo colored but they now have "www.codys-crew.org" printed on them. Drop by and pick some up.

The new Cody's Crew T-shirts will be coming soon. I'll keep you up to date...

Happy Birthday Girls...

2009-05-28T07:11:00.003-04:00

Yesterday was Daniela's Birthday. We had cake and I took cupcakes to her class so she could give them out. She will be going with some friends bowling this Saturday.

Today is Diane's Birthday. I haven't asked what she wants but we are having our second Cody's Crew Foundation board meeting tonight. I'm sure that will lift her spirits a little. She achieved the tough task of getting our 501(c)3 approval in one try and with little help. She did it all herself...

We had an 80+ year old oak tree taken down yesterday. The tree was beautiful but only 3 feet away from the foundation of our garage. I've been wanting it down for years but have been too busy to mess with it. With the price of fuel oil I'm going to start burning wood this winter. I should have enough wood for 3 or 4 winters from that tree.

I ordered our first Cody's Crew shirt last week. After we see how it looks and make any changes needed we will put them on sale over at Codys-Crew.org.

Thanks for stopping by..

Dear Cody...

2009-05-26T18:12:00.003-04:00

I just want to say that we all miss you so very much. Life is so hard without you here. There is not a day that goes by that we think of you and wish you were here with us.

Justin, Daniela, Mommy and Daddy love you!!!!!

Skyline Drive yesterday.....

2009-05-24T18:13:00.006-04:00

Here are some pictures from yesterday's trip to Skyline Drive...

Justin and Daniela did great.. This is after we finished the hike...

Can't beat this view...

We had a great time...

Caught him thinking..

Come on Dad, hurry up..

Taking a break...

The water just takes you away..

The kids wanted to go swimming....

It was hard to keep Daniela out of the water..

I like this photo..

Birds eye view..

Here it is!!!!

2009-05-18T20:05:00.002-04:00

You are looking at the new face of Cody's Crew Foundation. It was chosen by you the Crew members. Thank you all for your support. We are not going to stand idly by. We have many event ideas we are working on.

Things are rolling right along......

2009-05-18T07:29:00.002-04:00

It is with great pleasure that I announce that we received our 501(c)3 status this weekend. Diane did a great job with little to no help, just research and hard work. I'm very proud of her.

As of this morning the logo contest voting is closed... We had a great response and we'll post the winner tonight.

Go Pens!

2 more days of voting left.....

2009-05-14T06:44:00.004-04:00

Come on people, it's free. You don't have to sign up for anything and I don't sell your email address.... What are you waiting for? Go and cast your vote for the official Cody's Crew Logo. There are only 2 more days left.

www.codys-crew.org

I just wanted to take a minute....

2009-05-12T16:53:00.003-04:00

I wanted to let you know how things are going here. Mother's Day was very hard for us and especially Diane as you might expect. She was down in the dumps for two days. Although I haven't seen her today I did talk to her on the phone and she seems to be doing better.. Certain days and times seem to be hard for me. I can't explain it, I just think of Cody more some days and I miss him so. We still can't believe that he is not in our lives.

I think about what life is all about. I think that we humans believe in God because we just can't explain why things happen or really tough questions. Until Cody got sick I didn't really know what I thought and at times I still don't. I was not brought up in an overly religious environment. On the other hand as long as I've known Diane she has always said her prayers each night before bed. I can't speak for her and what she believes at this point. The loss of Cody has rocked her to her foundation. She has lost a part of herself and may never be the same. She seems to do a little better everyday. As for me, this has given me a purpose in my life. It has given me something to focus on. I hope that my children recognize what I'm doing and that some of it will rub off on them. As far as believing in God or the after life I feel as though I must believe. That is the only way I will see my son again.

I know that some of you may feel the need to write long paragraphs of scripture and that is OK but I'm not looking for reassurance or proof. I'm just releasing some of the pain I'm feeling right now. That was always what this blog has been about.

Relay for Life Speech

2009-05-10T08:08:00.003-04:00

I tried to post this on the website but it wouldn't play. I'll work on this but until I get it worked out here is the link..

http://www.youtube.com/watch?v=XFkF8TCHI4s

LOGO Entries are now posted on the website. Please swing by and cast your vote.

https://www.codys-crew.org/Logo_Contest.html

We hope to see you tonight!!!

2009-05-08T14:25:00.004-04:00

At the Prince William Fair Grounds in Manassas, VA. The time is 9pm sharp.

As I mentioned below, I'm the Honorary Chairperson for the Relay-for-Life. I will kick things off for the Luminaria Ceremony with a little speech about Cody and his battle with neuroblastoma. Please come and show your support if you can.

Sunday is the deadline for the logo contest. We have some great entries which I can't wait to post on the website. If you have an entry you still have time to send it in.

See you tonight!!!!

Collecting thoughts...

2009-05-03T13:40:00.002-04:00

So here I am, two months removed from losing such a large part of my world. Our lives have not been the same since March 6th. Diane is doing a remarkable job and working through this. The pain is so very fresh for her. Not a day goes by that she isn't constantly reminded of Cody. Songs on the radio, toys around the house, newly discovered Cody hand prints on the door of the bathroom or Sponge Bob playing on the TV. He is everywhere.

Life is moving along at quite a clip. I'm staying busy with Justin and Daniela and all that they are involved in. We are trying to do everything with them that we were not able to do for the past 4 years. They both seem to be adjusting well.

Running has become the vehicle with which we are going to drive the word about Cody's tragic death. I have some great friends that frequent the Runners World Masters Forum who have been praying for Cody for years. Now, they are running with me and raising money for Codys-crew.org. Our next scheduled run is the Vermont 100 on 100. If you would like to donate to my run you can do it on the Donations page of our website.

Yesterday I attended a funeral for my co-worker's son. His son was a US Marine who had served in Iraq and Afghanistan. He had returned to the states and was stationed in San Diego, CA and had been battling depression and other issues before taking his own life. It was such a hard funeral to attend. As all of you know I have something in common with my friend, the fact that we have both lost a child. Something that many of you don't know about me is that I too have lost a brother to suicide. It is one of the hardest things to try and understand. For young people life's issues seem insurmountable at times. They cannot see beyond today. One of the truly difficult parts of this is they do not fully grasp the devastation and destruction that they leave behind. In no way am I trying to say that I know what this young man was going through. He had been places and in situations that I have never been. I just wish he could have received help before it had come to this. I feel for his family. Now they must pick up the pieces. This year has to get better...

This week I must collect my thoughts and come up with some words of wisdom. I was contacted by the Director of the Prince William County Relay-for-Life. He asked if I would be interested in being the Honorary Chair for the Relay that Cody and I have attend and raised money for the last 4 years. Last year we were the top money raisers. As the day gets nearer I question if I will be able to hold it all together. It's one thing to type what you are thinking and feeling but it is completely different to speak it in front of hundreds of people. What do I say? Do I talk about cancer as a whole. Do I just talk about my beloved son? Do I mention that childhood cancers are not being funded properly? I have those questions to answer this week and put it into the right words.

There are 7 days until the close of the Cody's Crew Logo contest. All entries must be in by May 10th. I will post the entries on the website and everyone can vote on them. The winning logo will become the official logo of Cod's Crew Foundation. You still have time to email it to me.

So, that's it for now. I hope you all are doing well and enjoying life.

God Bless!

Went striper fishing with some friends today...

2009-04-30T20:21:00.003-04:00

What do you think about these big fellas???

May 8th Relay For Life

2009-04-29T16:38:00.005-04:00

Rich and Jenn,
it's funny that you asked about the Relay For Life. I have been asked to be the Honorary Chairman for the opening ceremonies. I get to say a few words when they kick things off. Since I'm a talker that is right up my alley.. :) Seriously though, I'm sure I will have a tough time keeping my composure. But, I think it is something I have to do. I need to mention neuroblastoma as much as possible because even most cancer survivors have never heard of it. I hope to see you both there...

Visit our website www.codys-crew.org

It's been a while, I know...

2009-04-27T16:07:00.006-04:00

I just thought that I would post a little family update. Diane told me I had better post something or you all would stop checking in... :)

Life has been a blur. Daniela and Justin have many things going on now. Staying busy is the best thing for them right now. Us too.... I took Daniela to Father/Daughter bowling on Saturday night. We didn't get started until late so we didn't get home until midnight. We both had a great time but we also both agree that 3 games were probably a little much. I won't be going pro anytime soon I know that...

Justin had his first Boy Scout camp out this weekend. No Dad this time. He seemed very tired when he got home yesterday so he must have had a good time. He and I go for our swim test on Tuesday night as a requirement for the canoe trip we will be taking next month. I can't wait for that. It sounds like a blast. I know he is going to love it.

Diane seems to be getting back to her old self a little everyday. We still miss Cody so. He and his spirit are everywhere in this house. The four of us constantly mention to each other that "Cody would like that" or "This was Cody's favorite." Here is a picture of something that Daniela wrote in the driveway. She didn't know that Diane saw it. It pretty much sums up the way we are all feeling right now.

I'm not sure what the stuff to the right is but you can see what she was trying to say.

The weather has turned very hot the past few days. It seems as though we skipped spring and jumped right into 90 degree summer temps. I have been getting back into my running. It seems as though it will be the vehicle that carries the word of Cody's Crew Foundation. More and more of my friends at Runners World Forum running races and raising money in Cody's name. We had our first board meeting last week and getting things ready to roll. We are planning many fund raising events including a 5K race. If all goes well it will be a yearly event.

Logos are coming in as I type. There are about 10 days left until I post the entries. Once one is picked it will be the face of Cody's Crew. We will put it on everything.

I ordered the new Cody's Crew bracelets yesterday. They are going to be camo like the others but instead of saying just Cody's Crew, they will give the web address. www.codys-crew.org.

I thank all of you for continuing to check in. I promise to try and post a little more often. Please check the web site. I have added a new page called "Kid of the Month." There I will honor a child who presently fighting the beast and an angel who is playing with our Cody... Please check them out....

God Bless!!!

Cha Cha Cha Changes.....

2009-04-25T19:15:00.002-04:00

Go to the new Cody's Crew website and look at the new changes.

8 Days Remaining!!!!

2009-04-23T15:11:00.005-04:00

Just a reminder from our friend Nancy.

"8 MORE days to donate money to Cody's Crew!

The whole month of April I am donating all profits - that is 30% of every sale will be donated to
Cody's Crew Foundation!
Go to my website and order anything and it will be shipped directly to you! That means you can order from anywhere in the United States and from the comfort of your own home!

www.mycmsite.com/nancytebell

Just cut and paste the link above into your browser window. I seem to be having issues with linking this site.

For those of you who don't know, Cody was in my daughter, Maggie's, class and Justin is one of my student's. The Johnson's have been kind enough to let me into their lives and share their memories of Cody and all he stood for - the pirates, the bravery, and everything else that made him the little man he was! This is the least I can do to help them, help others!

If you have any questions or just want to buy a few things that I may have it stock, the same 30% donation applies! Across the board the Month of April is Cody's Crew Foundation Month!"

In the books...

2009-04-19T11:23:00.005-04:00

"Cody's Crew of Beach Bound Pirates" did great.. Here is a picture of the team and a quick note.

First off, I'd like to thank all of the great Masters that went the extra 50 miles to raise money and awareness to neuroblastoma and Cody's story. We had a very tough but wonderful time. We had the greatest group of people you could ask for.

From right to left in the back, ritchie26385(Ritch), Wolfgate(Richard), GettingOlder(Kirk), Tony Mollica,

Middle row right to left, Meka(Shannon), Tankini(Susanne), Geel(Karen), Geetah(Bill), MangoAK(Donna) and Deck Ape down if front.

We had an awesome time. Bill made the flag and that flag stayed moving the whole 24 hours. Toward the end of the race when it was dark and the trail was lonely it became spiritual. I spent much of my run talking to Cody. I know he was watching us and he is very proud of us. When the pain became unbearable for me I just thought of what Cody had went through and my pain seemed to disappear. I will write more later or tomorrow but I since I got home before the others I wanted to get this great picture out there.

Unfortunately Mango hurt her foot and was unable to go the distance she wanted but she represented very well and hope she mends quickly. As for the others, we all made 50 miles and some did more. Meka place 3rd in the women's group. Bill was holding back due to his trip in 3 weeks to represent the USA in Italy. But Bill holding back is 10 times better than the rest of us going full out. Thank you Bill. Also, Meka gave up her chance to run Boston to be with us. A double thank you... You guys are the greatest.

Thank you Bill for putting this together. Thank all of you team members for making the trip and sacrifice for such a great cause. I love you all.

So far we have raised over $1000 from this event. Thanks to this great group of people....

Come on now people!!!!!

2009-04-15T14:45:00.002-04:00

With the hundreds of people who stop by my blog everyday we can only get about 8 entries for the Cody's Crew Logo contest? Maybe I didn't explain the requirements good enough. It can be your children or grand children who draw the logo. Kids seem to have many of the best ideas and pure artwork. We want new ideas. Many have already sent in versions of the Jolly Roger and that is great be there are many more ideas out there just waiting to hit paper. The dead line is May 10th.

On another note, Diane has gold children's cancer pins for sell on the website. Just go to Shell City on the site....

Come on people!!!!

www.codys-crew.org

Cody's Crew Is Live!

2009-04-11T17:20:00.002-04:00

Hear Ye, hear ye, Cody's Crew has just gone live. Please drop by, kick the tires and check it out. There is still much to do by I feel like it was time to kick things off. I will still be posting here on the blog but our organizational information will be displayed on the website. Please feel free to tell your friends and post links from your blogs.

WWW.CODYS-CREW.ORG

Cody's Crew Logo Contest!!!!!

2009-04-06T20:09:00.006-04:00

Diane and I have been kicking around some logo ideas the past few weeks and we decided to have a contest. We ask all of you who are interested to get out those markers, paints and pencils and start coming up with some ideas for the Cody's Crew Logo. This logo will adorn the website, letter head and banners which will be used at all Cody's Crew fundraisers.

The entries can be submitted one of two ways. First you can send a hard copy of your logo to:
Cody’s Crew Foundation
P.O. Box 2578
Manassas, VA 20108

The second way is to email it to me@ mjohnson@codys-crew.org.

I would like to set a May 10th deadline for all entries. At which time Diane and I will pick 5 entries. Then I will post the 5 entries on the web site and let all of you choose the winner. I'm not offering any monetary or material reward for this contest. The real reward will be knowing that your piece of art will represent Cody and his foundation. All entries to this contest become property of Cody's Crew Foundation and will be copy righted as such.

As for the family - it's just not the same. The void that is present is indescribable. There is no little boys voice, no tantrums, no excitement, no playing...only silence. We are reminded of our loss everywhere we go. Justin & Abby are doing as well as can be expected. They have had some problems at school but mostly minor. Diane has not been able to find any happiness yet and still yearns to hold Cody in her arms.

I will soon have the Cody's Crew website running. It will be accessible but still under construction. I hope to upload the tape that was played at Cody's funeral. It is a collection of pictures set to his favorite songs from his Ipod.

April is Cody's Crew Month.....

2009-04-02T08:00:00.004-04:00

I'd like to share with you this link. It belongs to a good family friend of ours.

"

www.mycmsite.com/nancytebell

If you have any questions or just want to buy a few things that I may have in stock, the same 30% donation applies! Across the board the Month of April is Cody's Crew Foundation Month!"

Upcoming stuff......

2009-03-31T07:46:00.002-04:00

I just thought that I would give all of you a little heads up on some upcoming events.

On April 18-19 there is going to be a 24 hour run for cancer which is going to be held in Hampton VA. A team has been put together and the name of that team is "Capt. Cody's Crew of Beach Bound Pirates", which is the brain child of my good friend Bill Allen. Geetah as he is so affectionately called on the Runners World Forum is one of the best ultra marathoners in the country. Here is one of his latest accomplishments. Bill is the 3rd guy from the right in the back row with the long hair. He and I met in Annapolis MD when I was running the Annapolis 10 miler. Anyway, our team consists of the anchor, "me" because I haven't been running nearly enough and many other of my RW friends. Although the entry fee for this race is going to American Cancer Society, some of the team members are raising money for Cody's Crew Foundation. I said it before, "I'm blessed to have such friends."

Here is the second thing I wanted to mention. Please mark on your calenders that on June 6th Cody's school is having a Cody Johnson memorial stone placed in the school garden. They are also working out the details on a fund raising idea where the kids will do laps at the school and raise money by getting pledges per lap. Diane and I are also kicking around the idea of doing a similar event on Cody's birthday, September 11th. September is also Children's cancer awareness month which most people do not know about. It is our goal to change that. So, that is about it for now. I will try to keep you all up on any new information and the progress of the website.

If any of you can make it to these events we would love to have you......

God Bless.....

Trying to move along......

2009-03-29T14:11:00.002-04:00

The days just are not the same around here. As we each try to find ourselves again it is quite evident that this place is not the same without Cody here. He has left such a void in our lives. We are all trying to adapt and focus on the task at hand. Nobody is having a harder time of this than Diane. There are days when she shows signs of progress only to take a step back and let the grief consume her. Luckily she has some very close people that she talks to and it really seems to help her. We both went to a grief counselor last week and will be taking the kids very soon.

I have spent the weekend working on the new Cody's Crew web site. I should have it up and running in a few weeks. Diane is having a lawyer look over the IRS foundation forms and we hope to have that resolved very soon. Those of you who have sent checks for the foundation please don't worry. We are not cashing those checks until we have everything in order and we can send you a receipt for your donation.

Megan,
Justin say's "hello" and "thank you". He is doing OK and misses his brother very much. They were very good friends, not just brothers.

Feeling kinda low...

2009-03-23T16:43:00.005-04:00

I had a great day at work today. I stayed busy and that does the job for me. But, I came home to get the kids off of the bus this afternoon and it just hit me. As I was standing at the top of our driveway I just had a heavy feeling of sadness dump over me. I started thinking about Cody and the way he would walk up the hill after he got off of the bus. The other two kids would be bickering but he would have this calmness about him. Maybe he was tired or the work needed to get up the hill just made him not get involved in the annoying argument taking place next to him. For whatever reason it was just Cody.

There was something primal or spiritual to that moment today. It's a beautiful day, sunny but cool and a gentle breeze that makes it perfect. I kinda stuck my nose in the air and took a deep breath. I don't know, maybe I was trying to smell my boy again. I caught myself talking to the breeze and the trees somehow thinking that Cody is out there watching or listening to me. I was kinda hoping that he would talk back to me. Oh how I miss him. This place just isn't the same without him.

Justin is in the other room playing a wrestling video game. It's a game that was a favorite of Cody and Justin. I use to remember hearing Cody say things like "that was a cool move right Justin?" Or "Justin, if we beat this guy do we fight the big boss?" Now all I hear is the sound of Justin working the controller. The volume is turned way down and he isn't saying a word. He is missing Cody as much as anybody. He seems to be trying to stay away as much as possible. He says that there is nothing to do without Cody here.

Cody is everywhere in this house. His clothes, his toys, his drawings or some papers with little Cody sayings written on them. His favorite drinks in the fridge and snacks in the cupboard. All of them bring back memories of him but they can't bring him back. Oh what I would give to get a chance to hold him again. Or, to have him sit on my lap and play the Pirate video game again.

Cody, you know that Mommy, Daddy, Justin and Daniela love you and miss you!!!

Cody's Crew Tattoo

2009-03-21T21:02:00.004-04:00

I just wanted to post the picture of my new Cody's Crew Tattoo... I went to the tattoo shop yesterday after work. The guy did a great job I think. I submitted a sketch of the drawing a few weeks ago. I didn't get a chance to meet the guy who was going to do it. So, all I asked was that the lettering stayed exactly the same. He could tinker with the drawing all he wanted. The lettering was done by Cody during his last chemo. Well, when I got there yesterday he had touched up the drawing a little and yes he redid the lettering. I asked that he do it the way I had it and explained why and he had no problem redoing it. I'm very happy with the work. This is the first tattoo I have gotten since 1979. It still hurts as much as it did back then... :)

You may have noticed that there is no "S" at the end of Cody. Well, that is the way he did it... So it's good enough for me...

Hello out there!!!!

2009-03-20T07:37:00.002-04:00

I know it's been a few days but there hasn't been much to write about. The house isn't the same anymore. The sounds, the smells and life that would resonate when Cody was here are gone. The kids seem to be making their way but often comment about Cody and how they miss him. Diane seems to be having the hardest time. I hope she can pull out of this soon. There doesn't seem to be anything I can say or do for her. I'm just trying to give her space and let her heal at her own pace.

Big changes ahead...
Last weekend I secured the domain name CodysCrew.org. Diane is getting all the legal stuff in order and when she is finished we will be sending out receipts to all of you who gave to Cody's Crew Foundation. We are going to be very picky where we send the moneys that are raised through his foundation. We are both adamant that this money will not go towards lining some CEO's pocket or administration fees. It will go to research! Over the past few years I have been directing people to give to Band Of Parents. They are a great organization of which I belong. We will continue to support and fund them also. Diane and I are also going to look into other studies, hospitals and Dr's who have ideas on fighting the beast.

CodysCrew.org....
In the weeks to come I will be unveiling the new website. I have some good ideas for fund raising. I'll be doing some special drawings and selling the prints. Now that I am getting back into running I will be doing some races in Cody's honor to raise funds. In the future I hope to organize a race in his name also. I'm kicking around a jewelry idea that I think will be a hit. I will also be asking for fund raising ideas from all of you. One thing Diane and I are going to try and avoid is that people forget. It is only human nature that now that Cody is gone from this earth and I stop writing on this blog everyday people will soon forget about the beast. I will be spending the rest of my days on this earth fighting the beast. It is my goal to see a cure for this evil disease in my lifetime.

Today....
I'm getting a tattoo. That's right, a tattoo. A few weeks ago I did a rough sketch of the first Cody's Crew tattoo. I will post it as soon as I can. It is my tribute to my angel.

Cody, you know that Daddy, Mommy, Justin and Daniela love you and miss you so much.....

Cody's Eulogy

2009-03-16T19:06:00.004-04:00

I've been asked by some people who were not able to make Cody's funeral if I could possibly post the eulogy. Well, here it is, and below is the wonderful eulogy that was written by Dr. Gonzalez and read at the funeral by Dr. Abu-Gosh. I'm trying to get the eulogy written and read by Sharon the Chaplain at Georgetown.

September, 11 2002…..

Cody entered this world as a miracle – our unexpected baby that was not supposed to be had fought his way into this world. Our lives would never be the same.

Cody spent his entire life fighting for just that, his life. Cody was our healthiest baby although he was hard to make happy. In many family photos he is crying. As we looked back at these pictures some time later we realized he was in pain. The beast had been taking over his little body. Three days before his second birthday he started a journey that no child should have to endure. After spending a painful week with fevers and leg pains he was admitted to Fairfax hospital. The Doctors thought he had leukemia – it turned out to be the deadliest form of childhood cancer - Stage IV Neuroblastoma. We were told that Cody probably had very little time to live. After a few questionable decisions by the team at Fairfax it was decided that Georgetown University Hospital was the best place for Cody. That decision gave us hope. It was there where they met Dr. Shad, Dr. Abu-Gosh and Dr. Gonzalez. It was this group of doctors, wonderful nurses and staff that gave us hope that our son could survive. It is this group of Doctors that we lovingly call the “A” team. Our “A” stood for angels.

Cody went through a very aggressive treatment over the next year. Most of his time was spent inpatient. Cody endured many intense rounds of chemotherapy, radiation, surgery and stem cell transplant. With the treatments came complications, We almost lost Cody in the spring of ’05 due to a toxicity from transplant but our Cody once again with his fighting spirit pulled through. He learned to talk while in the hospital. Some of his first words such as ‘milky’ referred to the medicines that hung by his bedside. All of the Georgetown staff became his second family as it was all he knew. He did give everyone a hard time but when he was feeling good we all treasured the hugs and kisses. This is when he met his girlfriend ‘Lori’ the art therapist at the time. Many years later and thousands of miles apart he always had his girlfriend. Even at two years old he wanted things his own way. One day he was trying to watch Dora the Explorer and we were talking to the nurse over his bed. He got angry and said “Trish – BE QUIET – You talk to much”! Cody was able to complete one full year of school with no treatments, just scans every 3 months. This is where he met his best friend ‘Spencer’. Although he never saw Spencer after that year he always talked about him. It was the only time his life was close to normal. He loved Hershey Park, the pool, Chuck E Cheese and the beach. We let him do all of those things. He played soccer when he started kindergarten. He was a natural, stealing and blocking with gusto. He carried the whole team – in fact we had to keep taking him out of the game to give the other kids a chance to play. Through it all Cody found time to live life while in his own special way he touched the lives of thousands. To children his own age he was just another kid. To adults he had a noticeable spirit that melted your heart. Even when he was in trouble he had a way to make people smile. He seemed to spend a lot of time in the principal’s office for altercations with other children. Cody’s time spent in the hospital made it hard to develop the social skills needed to get along in school. He earned many referrals and became a close friend of Principal Fogarty. Cody used to call them ferrals. When he got off the bus we knew immediately whether it had been a good day or a bad day. On a good day he had a bounce in his step and he would say “Mommy – I didn’t get any ‘ferrals’ today. When he had his head down and dragged his backpack up the hill we could pretty much guarantee that he had received a referral. Principal Fogarty was very understanding and gave Cody more leeway due to his circumstances. When Cody had to leave school for treatments it seemed to bother him more to miss school than the treatments themselves.

After several months of kindergarten he became ill with a stomach ache that would not go away. He had almost made it two years with no evidence of disease but it turned out the beast was back. It seemed as though every time Cody started to live like any other little boy the cancer would rear its ugly head again putting him back in the hospital.

Another chapter had started. The cancer had luckily returned to only one spot but unfortunately to one of the worst – his liver. After several more intensive rounds of Chemo we were sent to NY to one of the best Neuroblastoma surgeons in the U.S. They were not giving us any news a parent wants to hear. From their experience there was not much that could be done for Cody. Their surgeon had declined the operation he needed. Our Georgetown Doctors pressed forward and found a specialist who was optimistic about the surgery. He ended up with an 80% liver resection and pulled through once more. We couldn’t keep him from jumping off furniture within weeks of the surgery. He wanted to wrestle with his cousin Chris and his brother Justin. He would never tire of Monopoly at which he was a champ. Cody loved board games and we all knew to play by his rules and of course he always won. He was counting money and making change before his brother and sister. He spent his time in the hospital selling candy, pictures, and even band aids to all that attended him. He was saving for the beach and Hershey Park. His bug as he called it had once again been beaten. After continuing chemo Cody started the most painful treatment of all in NY in hopes of keeping the bug away. He started kindergarten for the second year in a row. He would attend for three weeks and then go to NY for two week treatments. The treatments were described as worse than labor pains. After three treatments his cancer would return. It wasn’t a good prognosis.

When he wasn’t able to attend school because of treatments he couldn’t wait for Justin and Abby to come home from school. As soon as Justin came through the door he wanted to play ‘guys’ or video games. He and Justin were best buddies. The first words out of Justin’s mouth when he walked in the door each day was “Is Cody home”? Cody wanted to grow up to be 10 just like his brother. Cody loved Sponge Bob and his favorite character was Patrick. He liked to say that he thought Patrick was funny because he was so stupid. He knew the Sponge Bob movie by verse and his favorite color was blue. He often said he wanted to marry mommy and Lori when he grew up. He loved for mommy to tickle him and to play pirate games with daddy. He also wanted to be a wrestler when he grew up. Cody loved his cousin Chris who has been by his side since he was born. When Chris was around everyone else was chopped liver. He and Chris spent endless hours playing video games and monopoly or listening to his MP3 player. He liked to call Chris on the phone and listen to the recording. If Chris answered Cody would laugh and hang up on him. This game would sometimes last for hours. Cody loved his old dog Bear who passed away this past summer. Cody often dreamt about playing with Bear. He told us he couldn’t wait until we were all together again in heaven playing with Bear. Cody was compassionate, even after finishing the terribly painful treatments in New York he could muster enough composure to help an elderly lady into the elevator at the Ronald McDonald House. Cody loved babies or any person he deemed more vulnerable or fragile than himself. He picked up the game of foosball very quickly. Many a player underestimated his foosball abilities and lost because of it.

Those hospital trips scheduled or not trumped any other plans made in our lives. But there was one constant, not once, not one time did Cody complain about having to go into the hospital. He made it bearable for us to get through these past 4 ½ years. He was our rock, our inspiration.

The last several months have been the absolute worst. Cody rapidly deteriorated and stopped talking about fighting the bug. He was suffering great pain and pulling away from the ones he loved. Although his body was beaten down his spirit remained. He fought to do things for himself until his last hours. He was a true champion.

Through Cody thousands have been made aware of the many children battling this deadly disease. As his parents we will continue his fight against Neuroblastoma in the hope that no other parent will have to face this immeasurable loss.

We would like to thank all of our family and friends who have traveled this journey with us. Without each and every one of you we could not have done it alone. Our special love and thanks to Dr. Abu-Ghosh who shares the loss of a boy she considered her own.

Cody was and always will be our little hero. By age 6 he had been through more than most people will in their lifetime. In his short life Cody has touched many. We can only imagine what he would have done with a lifetime. He is truly an inspiration and not a day will go by that we will not miss him.

Captain Cody was a pirate who sailed on a ship with pillow sail. But, he navigated most of our world on a journey full of fierce battles and swashbuckling adventures. At times he was a ruthless looking, sea crusted sailor with a black eye patch and a smoking gun and at others he was a sweet and kind gentleman of fascinating charm.

Like other pirates, Captain Cody had mercilessly plundered in table games leaving multiple social workers, art therapists, nurses, and child life specialist lost in wild waves. He rode horses through enchanted forests, used chutes and ladders to take on fortresses and castles, seized one property after another in monopoly, sank numerous battle ships on endless wars, and conquered space on a Lego spaceship. There was nothing he did not experience or see, always displaying great bravery and courage.

Like the worst of the buccaneers, Captain Cody had seized the ultimate booty and hid it deep in his hospital room. His treasure chest was brimming with chocolate coins, precious jelly beans, candy necklaces, and golden lollipops. Always seeking greater richness, he decided to sell his precious candy one piece at a time. The price depended on the buyer, a decision that only astute business men would take. However, if the buyer looked tempted but too poor to afford the buy, sometimes Captain Cody made exceptions and gave away pieces of treasure for free in an act of great compassion.

Like most of the good looking pirates he took plenty of hostages only with his charm and invited us to navigate the seas. He is known to give a hundred kisses all at once and the warmest hugs. He laughed hard and spoke loud. He played, bargained, and cheated silently. He not only loved the seas but also enjoyed the beach where he gave wings to his pirate dreams.

Cody also had the lifestyle of the pirates; he drank life in one sip, through his adventures he experienced and enjoyed the intensity of living, and nobody or nothing broke his sword or put limits to his adventures. Through his imagination he navigated seas, land, and outer space. He would not like us to be weak; he would like us to continue on living strong with his willpower and imagination as our continuous inspiration.

Corina Gonzalez

Now the work begins...

2009-03-13T07:36:00.002-04:00

Yesterday the kids went back to school. My relatives left on their own journeys to points all over the country. My daughter Corie leaves for Guam today to continue her tour of duty in the Navy away from her husband and kids. Unfortunately my sons Mickey Jr. and Joshua didn't make it but they both had a chance to see Cody before he passed. It was great to have all my brothers and sisters here along with my mother. I am one of seven kids so the craziness was something I remember as a child. When you throw in some of the children and grand children it can get pretty wild. I love them all very much and I'm glad they could make it.

We had been warned by the funeral director and many others who have been in similar situations that the hard part comes after everyone leaves and we are home by ourselves. Well it didn't take long to see that come to pass. Diane had gotten a little better everyday since Cody's passing but yesterday seemed to be a setback. In no way do I love Cody any less than Diane but I seem to be handling this much differently. She seems to be consumed by it most of her waking hours. Still crying at the thought of her baby being gone. Me, I just can't explain it. I did most of my crying the morning of his death, before the viewing and during the funeral. The kids, although they mention him many times a day they seem to be handling it pretty well. My company offers free counseling for such situations and I'm going to look into it today. I pray that Diane can find peace. I know that being a father who has lost his young son is extremely hard but as a mother it is much harder.

The funeral was wonderful. The unbelievable turnout of people was heart warming. We saw so many of our friends, family and people we didn't know. There were so many people from Georgetown Hospital that they must have shut down the Pediatric Clinic and PICU. So many people showed up from my office as did Diane's. The words that were spoken by Father Bob warmed our hearts and had Diane and I both in tears. She and I wrote the eulogy that was given by my friend Tom Ousley and to hear it put to words made everyone laugh and cry. It is truly amazing to see how a 6 year old child had touched so many people, many of whom he never met.

Besides the monumental task of healing we must somehow start to get our house together. For years now we have been stacking bags of papers, toys and games from each hospital visit. Every time Cody would go for a treatment, inpatient or not he would get a prize for his great behavior. We have toys in every room of our house. Boxes, bags or just piles. They must be gone through and Diane would not let anyone else do that. She will pick out the toys and keepsakes that have great memories and meant a lot to Cody. The rest I hope will go to children less fortunate than ours. We have leftover medical supplies that we will donate to charities that take such items. A little red wheel chair that was on lone from the clinic for Cody's final trip home must be returned.

As we try to get our lives back together we walk a fine line. One where we try to hang onto memories and good thoughts of Cody without somehow not living in the past. There is a part of you that somehow feels like you betray your son for even trying to move on. You feel like you must remain miserable for the rest of you days as a tribute to your lost child. You feel that you will be less of a parent for letting go. I know that is what my wife feels, on top of the gut wrenching feeling that she just misses her little baby. I love you Diane!

A wonderful writer...

2009-03-11T21:33:00.004-04:00

This is who I want to write like when I grow up. Monica(Moon) is a beautiful lady I met before I ran my first marathon in Richmond Virginia. She is a spectacular writer and it is so worth the read. I'm a skimmer by heart but I read every word. Enjoy...

Moon

Long day...

2009-03-11T07:24:00.002-04:00

Yesterday was one of those days that seemed so long but once it was over it seemed to fly by. It began like last 3 days did. I didn't sleep well and I was looking for a nap around noon but that didn't happen. Diane and I had to be at the funeral home @ 4 to get things ready. It also gave us time with Cody before anyone else got there. Although they did a good job fixing him up he just didn't look like our Cody. I can't say as I expected him to. I don't remember anyone every looking like themselves at a funeral. I took a box of his toys so we could display them the way he would have wanted. The people loved them.

The people, oh there were many people. The funeral director said that 200 had signed the book but he thought that at least 350 came in to see our Cody. The line wrapped out one room and up the hall to the next room. It made us feel good to see that many people had taken time to drop in. We had people from Florida, Pennsylvania, Kentucky, Washington State, Maryland and West Virginia. I'm sure there were more but I can't recall. I have a feeling today we will have many more people. I was surprised at all the people that brought their children from Cody's school. I just though that most would find it hard to let there kids see him. I think it was important for everyone who this little warrior. It is plain to see that he has touched many people in his short time.

Again I didn't sleep well. I was exhausted when I went to bed @ 10:30 last night but soon started tossing and turning around 12:45. I think my body is going to have to learn to sleep again after these past 5 years. We have to be out the door at 9 and @ the funeral home by 9:30.

The kids were pretty good last night. I warned them to be on their best behavior or they would be sent home. They were very respectful for the most part. It was hard for both of them to see Cody like that. Daniela commented that his hand was stiff and cold. She then started to cry. I did also. I'm very proud of Diane. Although many tears were flowing, she held up very well. I think the constant line of people that we were greeting helped her.

So now I get ready for another long day.

Viewing and funeral arrangements...

2009-03-07T14:08:00.004-05:00

Cody's family will receive friends on Tuesday, March 10th, 2009 from 5-8 p.m. at the Baker-Post Funeral Home, 10001 Nokesville Rd. Manassas VA.

A Mass of Christian Burial will be offered on Wednesday, March 11th, 2009 at 10:00 a.m. at All Saints Catholic Church, 9300 Stonewall Rd. Manassas, VA with Rev. Robert Cilinski presiding as the celebrant.

Interment will be private and take place at a later date.

Memorial contributions may take the form of a donation in Cody's name to Cody's Crew Foundation, P.O. Box 2578 Manassas, VA 20108. The contributions will be distributed to the appropriate organizaton for the continued fight against Neuroblastoma.

Cards and letters can be sent to:
The Johnson's
8105 Blandsford Dr.
Manassas, VA 20111

Thank you all.....

With the heaviest of hearts....

2009-03-06T08:47:00.002-05:00

Our Cody passed away about 8am this morning....

Update: For those of you planning on coming to Manassas, the viewing will be Tuesday and the funeral is Wednesday.

Thank you all very much for your prayers and support.

Preparing ourselves for the worst...

2009-03-05T19:38:00.004-05:00

The past few days Cody has slept more and more. We seem to have a much better handle on his pain which is probably why. He has been communicating less and less. I took a couple of pictures of him and I just don't have the stomach to post them. I don't want to remember him like this.

Dr. Abu-Gosh came out to our house to visit Cody today. We talked with her for a while and she evaluated him. His fingers and toes are now looking blue which means that his lungs are starting to be less productive. His breathing is becoming more and more labored. She believes that it could be only a matter of a couple days. We also met with the Dr. from Hospice. We decided to sign up today. It is time.

The fact that we are at home makes some things easier but it makes it a little hard on the other kids. When they are not at school they can't get away from it. School is definitely good for them right now. Cody has tasked me with building all of his lego sets. He use to help but now that doesn't happen very often. At least that gives a mindless task to take my mind of the negative stuff. Diane doesn't seem to have that advantage.

Done...

2009-03-04T08:39:00.002-05:00

Well, I couldn't post last night for a number of reasons. I was spent mentally and didn't have the words for a post. The kids took it pretty hard. Daniela cried for quite some time and asked many questions. In fact I'm still trying to answer those questions this morning. As for Justin, he took it quite differently. His first reaction seemed to be shock and then anger. Cody didn't want them in the same room last night. He had me working on his lego set. Even though he is on pain meds we still have to get the right dosage. There is a fine line between pain and totally knocked out. We hope that we can find that line.

One of my older sons Joshua came up for a few days. He is the one in the video with Cody in the baby chair. It was important that he come up and see Cody for a few days. He is a good distraction for Justin and Daniela. They love Josh. So, I'm keeping the kids at home today in hopes that they can digest this situation a little better before they go back to school. I think school will be good for them. Daniela immediately was worried that her brother would pass while they are at school. I had to reassure her that I would come and get them if that point was coming. I never imagined I would be dealing with this type of situation.

I may post some pictures from our beach trip today. I will see if I'm up to it.

Where do we go from here???

2009-03-02T20:59:00.002-05:00

There just won't be much good to report for a while. I had to come home by myself tonight. They kept Cody because they couldn't get the oxygen and pump delivered today. He is in such pain that it is unbearable to watch. Today they put him on a morphine drip pump. That is the pump that we are waiting for. They are going to get it started at the hospital before he can leave. He was in such pain today that they couldn't do the radiation. I'm not sure but they may decide to forgo it anyway.

We sat down with the doctor and social worker today. We talked about Hospice and the pros and cons. One issue that has to be researched is how my insurance would handle it if we wanted to hospitalize him if we chose to. Apparently some insurance companies give you a hard time if you turn to Hospice and then decide that you want to go back to hospital care. We also talked about how we are going to tell the kids. We have decided that we will have to tell them tomorrow. Due to his major pain and need for oxygen we asked the doctor how long she thought we would have left with him. She said that because his breathing is becoming more labored and yesterday's X-ray showed the beast is really taking over now it may happen very quickly. Diane pressed for a guess on the actual time and the doctor said it could be a week or two, she just didn't know for sure. We also have to make the decision of where we want him to be when he passes. That in itself is a tremendously difficult decision.

So, now we take it one task at a time, one day at a time. First, get him home. Second, talk to the kids tomorrow and cry together. After that who knows....

From 80 to 30

2009-03-01T12:56:00.005-05:00

What a difference a day makes. Yesterday at this time we were getting ready to head out of Florida. I was dreading putting long jeans on again because it was quite warm and humid. Now we are expecting 4 to 8 inches of snow tonight... Oh well it's good to be home. I will post more pictures later but here are a couple from our trip.

He did make it to the beach one day..

And a few dips in the pool...

Here is something that the staff from the hotel made. They were wonderful and made us feel so very special. The shells were made of chocolate and the sand was made from graham cracker crumbs.

Now for some bad news. Cody will have to stay another night. His oxygen level is 94% when he is awake. It is 84% when he is sleeping. The beast is advancing in his lungs. He will get a CT scan today if they can schedule it. Cody's liver has swollen to the point of leaving very little room for food in his stomach but they still want to put the tube back in his nose. His bilirubin numbers have almost doubled. It appears that the liver will possibly do him in before the beast will. He needs to be sedated for the tube but they are not sure if his liver can handle the propathol that is used to sedate him. I don't really think I want to put him through the install of the tube without sedation. God please help him! I don't want my boy to go through this anymore. Please help him...

Help needed:

This blog has been a blessing in so many ways. It has given us a way to relay information to our loved ones that live far away. It has been therapy for me giving me a way to relieve stress and express myself. It has made many of you aware of a disease that you have never heard of. But it has seemed to cause a problem that I didn't foresee. As many of you know we have chosen not to tell Justin and Daniela about the dire straits that Cody is in right now. We didn't want to say anything until we absolutely had to. Well, unfortunately I think the time is near. A good friend of our family called me while I was traveling into the hospital today. She teaches at the school that our children attend. She called to warn me that the word of Cody's very serious condition has been spreading amongst the kids at school. The information that this blog conveys to people is written on more of an adult level and isn't written for children per say. OK, to the point. I'm asking all the parents and friends of children that go to Bennett Elementary School to please speak with your children. Please explain to them that Cody is very very sick but we still hold out hope that a miracle can happen. Our fear now is that Justin and Daniela go to school and hear some child say "I heard that Cody is dying." Or there may be that child that does not get along with Justin and Daniela and out of spite say something very hurtful. In the days, weeks, months and years to come we will have a tremendous amount of hurt to address. Please explain this situation as best as you can with your children. I know you all understand that we are trying to protect our children the best we can.

We're back....

2009-02-28T23:12:00.001-05:00

Well, Cody and Mommy are at Georgetown and the kids and I are at home. I'll write more soon....

Saturday morning already.....

2009-02-28T10:20:00.000-05:00

So it’s Saturday morning and the kids and I are the only ones up. We will be packing and getting stuff together as soon as Diane and Cody get up. We will be checking out around 1:30 and hope to get on the road by 2. We have to return the car to an off site car rental and take the shuttle bus to the airport. We will be taking a detour before we get home though. We will be dropping Cody and Diane at Georgetown. Dr. Abu-Gosh has a list of things that need to be done including IV hydration, new feeding tube, check blood and X-rays to check the growth of the beast. We’ve noticed that Cody’s breathing has become more labored now. He is breathing faster with more shallow breaths. I hope he doesn’t have to stay in the hospital too long.

At times this week seemed to go very slow and now that it’s almost over it seems to have gone by too quickly. Cody had a good morning yesterday and wanted to go to the game room. He played a game that has a light that goes round and round. You must hit the button at just the right time to have it stop on the red prize light. I think he played it about 100 times and won 6 times. It was the only thing he really wanted to do. He has enjoyed playing Webkinz with Chris this week. He just can’t do things that are physical anymore. His legs hurt him too much.

Once I get home and I can collect my thoughts I have a list of people to thank for this trip. It really has been a God send.

Thanks for reading…

This is obviously not a vacation.....

2009-02-26T21:14:00.002-05:00

It seems as though our little boy is slipping away from us. He is just not the same child. He no longer wants the kids or me around. Diane and Chris are who he wants to be with. He did allow me to play putt-putt with his gang today. I was able to pick him up and hold him a couple of times. I was even able to put my nose in his hair and smell him again. For those of you who have followed my blog a while you know that is one of my favorite things to do. There is something about a small child’s hair and their smell. It just makes me feel so close to him. I’ve missed it terribly. Throughout the game he worked very hard to walk from one hole to another. His limping is getting very bad and he is losing his muscle tone also. I’m not sure if the radiation worked. After he would get his ball in the hole he would sit down near the hole and wait for us to finish. He seemed to drift far away with a blank stare in his eyes. He doesn’t want you to speak to him unless he speaks to you first. He also does not like to repeat himself. It makes him so angry.

It appears that we will be leaving Saturday afternoon. I’m almost thinking that we need to get 3 seats away from their 3 seats just to keep the peace. I think we need to get home and be close to his doctors. There is a bit uneasiness about teetering on the edge of going to the hospital. I’m sure they have very good hospitals here but they are not Georgetown. The doctors are not his doctors.

Justin and Daniela seemed to be having a pretty good time. We’ve been trying hard to let them do as they please. Justin has met a boy and his brother who are from Vermont. They have spent the last 3 days together. Daniela has been playing with them and today she found another young boy to play with. I think I will rent bikes so we can ride down the road. I feel like the best I can do now is keep the other two kids away and everyone will be happy.

Thanks for reading…

Morning Update: Diane just woke up. She said that she and Cody were laying in bed last night and he told her that his tummy hurt and it feels like a Great White shark is biting him. She said that maybe you will feel better in the morning, he said "no I won't." It is really breaking her heart. She watches him at the pool or playing putt-putt and she says he is so depressed. He watches the other kids play and he knows he just can't do it. I believe Max's dad. The darkest days are yet to come. This is just heart breaking.

Update...

2009-02-25T14:31:00.001-05:00

Yesterday was a much better day than Monday. We were awakened at 7:30 by Cody standing at the bedroom door saying “let’s go to the beach guys.” “Get up, I want to go to the beach.” So, with one eye open I helped Diane get the kids together as quickly as possible. With Cody, the last few days you have to seize the moment because the mood can do a 180 in seconds. We headed down to the beach and were able to have about 30 minutes of fun with Cody and the kids playing in the sand. I cannot say enough how he has changed. There just seems to be very little happiness in our little boy. He has only laughed a couple of times in the past few days.

We had some visitors yesterday. Diane’s father and his wife spend the winter months in Florida every year. They drove over from St. Pete which is on the Gulf Coast. Also my oldest son Mickey Jr. drove up from Tampa. Mickey hasn’t seen Cody since before he was sick 5.5 years ago. I also forgot to mention that my daughter Corie was able to get home from Guam on Saturday before we left.

Today I will be taking Daniela up the road for a ride on an air boat. It was originally set up for Cody but he wants nothing to do with it.

Cody had a temp of 101.6 last night. The magic number is 102. He will have to go to the ER if that happens. We are trying to move flight up to Saturday if possible. It is very touch and go right now. We really don’t want go to another hospital. Since Cody has made it to the beach already I guess we can leave at anytime. I’m not looking forward to the flight back. Although the people of Air-Tran were absolutely wonderful, just getting from here to there and keeping Cody happy is not an easy task. He is hard of the other kids.

We are here for now......

2009-02-23T16:37:00.000-05:00

Although it was a very stressful trip, we are here. It is 12:30 and Cody is still sleeping. We are going to let him do what he wants to do.

The day started with a stretch limo ride to the airport from our house. The kids absolutely love riding in a limo. Cody at one time said he loves riding in a limo more than being at the beach. He later took that statement back. :) The limo ride was nice but rough. Cody was in a terrible mood and most of the trip didn't want anyone to speak. As we started through the security line Cody got sick to the stomach. Right before we were to go through the x-ray machine he had to throw up. I picked him up and held him over the trash can. Well, not only did he throw up but in the process the feeding tube that goes from his nose to his stomach came out of his mouth. This was very traumatic for him and most of the people standing in line. I hurried and pull the tube from his nose and out all together. He was very upset. We cleaned up and headed for the plane. We were not going to let that stop us. He will have to have a new one put in the next few days.

When we arrived at the hotel it was chilly but the kids were not going to let that stop them from going to the pool. We hadn’t eaten most of the day so were all hungry but we let the kids get dressed and headed over to the pool. The kids loved it. Cody was like his old self as soon as he hit the water. He was doing his best to do the free style stroke. He is actually a very good swimmer for only watching Justin and Daniela. So he stayed in the pool for about 15 minutes and then wanted out because he was getting cold. We left the other kids with Chris and headed back to the room. Cody and I jumped in the big Jacuzzi tube and warmed up while playing with his little monster guys. We had a great time. After the kids got back we ate pizza and veggies, and tried our best to keep him happy. The kids are doing their best to keep him happy.

2:28pm, Cody was able to get enough energy to get outside. We were heading to the beach but to do that you have to walk past the pool. He saw all the kids in the pool and decided that’s where he wanted to go. He got in the pool and lasted for about 10 minutes. He was cold and wanted to play in the tube with me again. He hasn’t made it to the beach yet. I hope by this afternoon.

He is very lethargic today. We had to give him some morphine because his tummy is hurting him. We were able to get to Walmart for goggles and beach toys. I pray that we are able to get him down there to enjoy them. He is just not the same boy. We miss our Cody!!!

The hardest thing I have ever had to do....

2009-02-22T05:54:00.003-05:00

I knew I was going down to the hospital to sign some papers when I took Cody in yesterday. I even had a good idea what papers I was going to sign. Besides the authorization of Cody's medical records to be given to another hospital if necessary I had to do the unthinkable. I had to fill out "Do Not Resuscitate" papers for my son.Diane had spoken with the Dr. before I left for the hospital and the Dr. told here that she was going to have the papers ready to sign. You can never be prepared for that. The Dr. hopes that they will not be needed down there but we have to be prepared for the worse. With every stroke of the pen it was all I could do to see as my eyes were welling up. This is just not the way it is suppose to be.

So all the plans are in place, the cloths are packed and we are ready to go. We just hope that Cody can enjoy this trip for the whole week. Yesterday's visit to the hospital turned out to be much longer than we expected. He was scheduled to get plasma which we knew about. Then some of his liver numbers can back pretty bad. Cody has been complaining of a tummy ache the past few days. We didn't know if he was constipated from the morphine or what was going on. It turns out that he may have an infection in his liver. It is very swollen and has been bothering him most of the day and night. Up until now it was just his bilirubin numbers that were out of wack. But now they are all heading in the wrong direction. So, he was given two IV antibiotics before we left which he will have to be given our whole trip. We pray that it works because as it stands now we don't know what will give out first, his lungs or liver. He may not make it the full week.

Our little boy is slipping away from us right before our eyes. He no longer wants to wrestle with his brother or Chris. He just doesn't have it. He is very irritable and is so hard on Justin and Daniela although I'm sure he doesn't mean to be. Every once in a while there is a ray of light that shines through those dark clouds when he starts to laugh. Yesterday Justin went with us to the hospital. They were laying in the bed together while Cody was getting his infusion and Cody said something that made Justin laugh while he had a mouth full of soda. Justin could hardly keep from spitting the soda out all over the room. Well this made Cody laugh so hard. It almost made me cry to see them like that. I couldn't help but think that we will be so removed from those kind of moments in the days to come.

The doctors have been so helpful in getting us prepared for this trip. Dr. Abu-Gosh has been the best. She has been with Cody since the day he was first diagnosed 4 1/2 years ago. She is family. She has contacted the cancer center down in Orlando and the hospital down in Vero Beach where we are going. She has sent all of Cody's medical info to each of them so they will be ready just in case we have to go.

Thank you all!!!

2009-02-20T21:35:00.003-05:00

Thank all of you for the outpouring of support and prayers. We are truly humbled. The past two days have gone bye at quite a clip. Thank all of you for offers of places to stay and transportation. We have been blessed with good friends that have set us up. I will not divulge anymore until I ask if they don't mind me mentioning it. We will be heading out by plane on Sunday and coming home in 8 days. That's right, plane. Diane wasn't too thrilled about an 18 hour train ride. At least not this time.

I'd like to share a couple of photos with you that I took today before we went to Georgetown.

Mommy and Cody tickling each other.

Watching Sponge Bob...

No way to prepare for this....

2009-02-18T16:04:00.003-05:00

Well, our hospital visit could not have gotten much worse today. The results of Cody's CT scan was much worse than we thought possible. His little lungs are 50% covered with cancer. He is also showing spots in his liver. To use the word devastated would be a major understatement. The doctor couldn't tell us how much time we had but with the progression of the beast from the scan 3 weeks ago to today she thinks it could be 2 weeks to 2 months. He will start getting short of breath as this progresses. She said that they can keep him comfortable and he will have to go on oxygen when the time comes. There is basically no way we can treat him now other than to do a little more radiation on his legs to relieve the pain. She is going to ask the radiation Dr. if there is any way to treat his lungs but she doesn't believe there is.

So, we are now planning on leaving for the beach this coming Monday. We are going to go as far south as the train will take us. We will deal with the plans in the next few days. Cody was suppose to get radiation on his legs through next week but the doctor says that we need to go to the beach now. Cyber Knife is no longer a concern. We are no longer pursuing that treatment. We are now in memory making overdrive mode.

We have decided that we are not going to tell the kids until we absolutely have to. We don't need anymore people worrying than we already have. As far as Cody goes, we are just going to keep him as happy and comfortable as possible. I wish there was better news to report but there unfortunately is not.

Thank you all for the prayers.....

Yesterday...

2009-02-17T08:14:00.002-05:00

I think it was the most stressful day of my life. The accumulation of worrying about Cody, worrying about Diane and worrying about Justin and Daniela mixed with Cody's volatile reactions to everything is almost more than I can handle. It is hard but I have to keep reminding myself that this is all about what Cody is going through and not anything else. I have to stay focused.

Cody made it through about half of his examination yesterday before he said "no more." He didn't want Dr. Abu-Gosh to look at the new bump in his groin area. It was about 10 minutes before he had to go get his last radiation treatment on his chest when it was decided to give him some morphine to see if it would help. So we gave it to him right before we headed downstairs for the treatment and within 15 minutes it took effect. He was a completely different child. It is just as we suspected, all of his changes in personality are being caused by pain. So the Dr. has now prescribed morphine for Cody in hopes of making his days a little better. There is one problem with the morphine though. He seems to have emotional swings that just add to all of the stress. I would tell anyone, "you do not want to be around the Johnson household right now."

Cody will start radiation on his legs today. The doctor is going to try his best at using the conventional radiation without damaging his growth plates in his legs. We simply cannot wait for the Cyber Knife issue to be resolved. The pain in Cody's legs combined with the pain he will be feeling for the next week from the radiation to his chest is why he is acting this way. If Cyber Knife is approved then they can switch.

Tomorrow is a very big day. He will get a CT scan that will tell us how fast the beast is advancing. Dr. Abu-Gosh was pretty sure that the new lump in his lymph node is neuroblastoma and it is not a good sign. We are not going to make any plans for trips or anything else until after we see the scans. Cody's liver continues to do poorly when it comes to moving the bilirubin out of his system. In Dr. Abu-Gosh's own words, "our hands are tied as far as treatment goes unless his liver turns around." She also said that any experimental treatments are out of the question because of his liver and the risk involved.

The beast has us backed into a corner right now. Cody continues to fight but I wish I could take all of this away from him. Although they don't say it, I think the kids know that this is not going very well. They see their brother getting worse and worse. They see Diane and me losing control of the situation. I don't have any idea how we are going to explain this to Cody or Justin and Daniela. I don't have a clue how we can put it into words.

Thank all of you who have offered ideas for our trip to the beach. I will give you an answer when we have a better idea where Cody stands and his treatment. Thank all of you for your prayers and continued support. The dinners, the gifts, the cards all mean so much to us. The offers to help with Justin and Daniela have made their lives a little better and that means the world right now. Although the past 4 years have been hard we know it's going to get worse before it gets better and without your help we would all most certainly be in the nut house.

Bless you all!!!!

Prayers needed!!!!!

2009-02-14T14:34:00.002-05:00

What was suppose to be an uneventful weekend has started out in a bad way. Last night when going to bed Cody told Diane that his groin area hurt. It turns out that the gland on the right side of his groin is swollen pretty bad and is hurting him. Diane called the Dr. and I was getting ready to take him in to Georgetown. But, the doctor said we didn't need to come in unless he has a fever. If he has a fever it is possible that it's an infection. The fact that she has told us to enjoy the weekend and she will see us Monday speaks volumes. I spoke to her for a little while and asked her what she thought was going on and she believes it's the beast. We hope and pray that it isn't. I asked her if we are at the cross roads now and she believes we are. Cody's liver is not well, so we can't continue chemo. The half dose of chemo he had a few weeks ago appear to have no effect on the neuroblastoma. With the apparent progress of the beast in his lungs, bones, esophagus and groin the prognoses is not good. If Diane is up to it we will all go in to Georgetown on Monday. It appears that "the talk" is now inevitable.

Cody has been extremely irritable the past few days. We believe he is in pain and that is his way of expressing it. He just can't help it. I think we will be putting him on morphine soon.

Cody has been saving his money from the sale of candy to go to the beach. Most of you know that he has always loved the beach. It appears that we will be going soon. I think we will be heading South for the warm weather. I will be talking with the doctor about a gap in his radiation treatment to find a good time for the trip.

Diane is a wreck and I'm numb. This is a day that we have not wanted to come. It's the day when it all seems to smack you right in the face.

Please, please, please pray for Cody....

Corie, I will have the doctor get in touch with the Red Cross on Monday. Love you!

Not much.....

2009-02-13T08:14:00.002-05:00

to report here. I will be taking Cody in for radiation today. His last treatment on his chest will be Monday. It was decided that we can no longer wait for word from the insurance company on the Cyber Knife issue. It seems that their word is final and/or nobody else cares to intervene or has no influence on the all mighty insurance companies. The doctor at radiation says he will try to use the regular treatment and hopes to minimize the damage to his growth plates. We will address the insurance company at a later date. Cody is our number one focus right now. As of yesterday his bilirubin numbers are still climbing but his other liver numbers are down slightly.

So, next week we continue radiation on the legs to try and stop the onslaught of the beast in his little legs and hopefully relieve some of the pain. On Wednesday he will have a CT scan on his torso and neck to see what affect the chemo had on those areas.

This weekend will be a special one. Tomorrow is Chris's 20th birthday and the kids and Diane are going to have a party for him. You all know how close he is to Cody and he is like one of our kids. Next year we'll be able to go out for a beer... :)

Justin crosses over from Webelos to Boy Scouts on Sunday. He has worked hard and stuck with it through the rough years and I am proud of him. It would have been much harder if it weren't for the support of the other pack parents. When I couldn't make it they made sure to pick him up on meeting nights and to other special trips. Again, proof that we have so much support during this time of need. Thank you all....

I wish.......

2009-02-11T07:33:00.003-05:00

I had some good news to report. Cody's declining health continues to consume our every waking moments. I had a chance to speak with Diane a little while last night. She didn't really want to talk that much and was extremely tired after the day at the hospital. Cody had blood drawn, and had his radiation treatment to his chest while waiting for an opening at ultrasound. His liver numbers continue to climb and the doctors are very concerned. They are meeting with the liver specialists today to discuss his situation. Things are not looking good at all. He continues to turn yellow which at this point is almost tan. If his liver doesn't soon recover the toxins building up in his little body will poison him. His liver is now moving to the forefront of concern because we can't continue treatment of the cancer with the way things are going. He would've started chemo this week if it were not for his liver. Can you see where I'm going with this?

Last night, after Justin and Daniela went to bed I convinced Cody that he needed a bath. His little feet were starting to stink..... LOL He was eager to play with his boats and little guys. I went back out in the living room with Diane and we could hear him talking to himself while he was conquering the high seas with his little guys. We both looked at each other with a sense of helplessness and I said "you see, he just wants to be a little kid." Through all of this hell, that is all he wants. He wants to play games, read books, eat Big Macs and play with Justin and Chris. As I kissed her she asked me if I was praying. I said "yes, but not just for his healing. I'm praying that he doesn't hurt anymore and have to got through this crap anymore." Why does a little child have to go through this? I will never know the answer to that question.

This all seems to be taking a toll on Justin also. In the past year he was given a prescription for stomach issues. He hadn't been taking it for a couple of months but last night I notice an empty pack lying on the kitchen counter. So I went upstairs and asked if he was taking them again and he said "yes." He told me that his stomach has been hurting at night because he is worried about Cody. Over the past few weeks he seems to be getting into a little trouble on the bus and at school. I can't help but think that this is all linked together.

So, as we wait for word about Cyber Knife and Cody continues his radiation treatments. We pray for his liver to wakeup and start doing what livers do. We are also just trying to enjoy every day together, making memories and trying to keep it all together. In my mind I try to think past today and plan for the warm weather and things I would like to do with the kids and Diane. Through the hell of the past 4 years there has been some good that has come from it all. I feel it has made me a better man. I feel it has made me a better father and husband. I feel it has made me a more compassionate person. Life is a very strange journey. It kinda reminds me of some lyrics to the Eagles song "Waiting in the Weeds."

"The phases of the moon
The chambers of the heart
The egg and dart of small gray
Spiders spinning in the dark
In spite of all the times the web is torn apart"

We just keep going. Through all that life dishes out, we just keep doing what we do.

No News...

2009-02-09T21:04:00.001-05:00

We haven't heard anything about the Cyber Knife yet today. I will let you all know as soon as I do.

If you get a chance, view the video to the right. I've wanted to put this together for a long time. I think it turned out OK. Let me know what you think.

Thanks for reading...

Thank you all !!!!

2009-02-08T11:21:00.001-05:00

I would like to take this time to thank all of you for your outpouring of love and support. The letters and suggestions that you have written on Cody's behalf have me speechless. That is really saying something... Moon, Mary and Norine your letters have touched our hearts and we can't thank you enough. Once again we have had neighbors, family, friends, teachers and even strangers help with dinners, and with Justin and Daniela. We thank you all. My family and I don't know where this journey is going to take us but I do know one thing, we are very blessed to have such family and friends in our lives. I would again like to mention that Diane and I are very blessed that we work for such compassionate companies that have been so understanding and supportive through these years. Without them our world would definitely come crashing down. They allow us to have some sort of normalcy in our lives while dealing with this terrible situation.

Just to let you all know where we stand with the whole Cyber Knife issue right now. I know that so many of you have sent letters and emails to Senator Colgan. We also had a letter drafted and hand delivered to Mr. Colgan yesterday. Diane's cousin was able to hand deliver the letter on Saturday. Mr. Colgan told them that he meets with the Commissioner of Insurance on Monday. How lucky was that timing? It remains to be seen how this will all play out but it is our best shot.

On Thursday Cody’s liver enzymes were still climbing. A few are related to the chemo he had received and a few are still a mystery. The Doctors are becoming very concerned that the liver has not turned around by now. One of his clotting factors was also on the rise which had been normal until now. We will have new blood work drawn on Tuesday as well as another ultra sound on his liver.

They denied Cyber Knife....

2009-02-05T09:40:00.004-05:00

I just received a phone call from Diane. The insurance company has denied the Cyber Knife procedure. Diane is having a letter drafted in hopes that we can get our Senator to sign it. If any of you know someone who may have some influence in this area please let us know. This is just insane.

Yesterday Diane had to carry Cody the whole time she was at the hospital. His left leg is really hurting him and he can put any weight on it. It is so hard to see him this way. It makes me want to cry. Through it all, he really doesn't complain. He just gets from point A to point B the best he can.

Thanks Mary,

Our Senator is James Colgan of Virginia. Here is a link to his page.

Back to our reality...

2009-02-03T11:17:00.007-05:00

The Super Bowl was just that, Super. We had a great time and it was one of, if not the best Super Bowl I have ever seen. The kids had a great time. Diane had purchased some of those little streamer poppers that pop when you pull the string. I had a hard time getting them to save some for the end of the game. It's a little hard for me to post the pictures because Cody is so yellow. I guess I will just pick a couple good ones and post them anyway. We will find out today if his liver is better or worse. I would be surprised if it were better. He is just looking more yellow. It's starting to bother me a little that people are staring at him when we are out in public. I just feel so bad for him.

I took Cody in for radiation setup yesterday. He will start today and it should last 9 or 10 days. He had to get marks all over his legs and one right in the center of his upper chest. They use these as markers for the radiation. We are still having problems getting Cyber Knife approved by the insurance company. I wonder if one of the insurance executives would go through this if it was their loved ones that was in need of this procedure. I bet not!

I have a government security audit at work this week. It is always a stressful time. I've been talking to many of my associates and have been asked about Cody and how he is doing. It is becoming hard to talk about it. I know that people mean well but I have a hard time keeping it together when I'm talking about Cody.

I will post when I get any new information. Thank you for the prayers, well wishes and congrats on the Steelers win. My family and I appreciate the love and support.

Update:
Diane just called me and said that the insurance company approved the Cyber Knife procedure. The squeaky wheel gets the grease. She had been making calls and rattling some cages and it seems to have paid off.

ReUpdate:
I misquoted Diane. She apparently told me that they had just resubmitted the Cyber Knife claim but the person with the insurance company who spoke to the doctor thought that there was a good chance it would be approved.
Also she just told me that all of his liver numbers are higher. They suspect is caused by the chemo. Cody will probably need platelets and red blood soon. We are back in the chemo groove...

Here are some of the Super Bowl pictures I promised.

Justin and Daniela enjoying the game.

Mommy and Cody..

My man..

Cousin Chris with Justin and Cody...

Cody loves Chris... Chris and Cody have always been close.

Buddies..

Pretty Boy...

Welcome to Steeler Country !!!!!!

2009-02-01T17:41:00.004-05:00

Go Steelers!!!!!!

Seems like a good time for pictures....

2009-01-29T21:58:00.008-05:00

I thought this was a good time to download the pictures from my camera. I wanted to get ready for all the Super Bowl Pictures.. Hope you like them Mom...

Enjoying time with his brother and best friend...

Here is Cody's new favorite game. The castle game.. I have yet to win.. :)

He knows exactly how he wants to set it up...

You can really see the yellow in Cody's skin compared to Justin.

Tonight while watching Sponge Bob..

Here he is schooling the new art therapist and mommy...

Showing his great ability to concentrate....
I think that is what gets him through all of this...

One step forward, one step back...

2009-01-28T20:49:00.003-05:00

As good as yesterday was today was that bad. It all started about 5:30am when Cody had a real bad reaction to the IVIG they were giving him while he was sleeping. I tried to consolidate the things that needed to be done so we could get home early today. Well, we just got home at 8:00. The reaction that he had to the IVIG was major shivering and then fever. It took him 40 minutes or so to get through it. I felt so bad for him. There was just nothing I could do to stop it. The treatment was suppose to last for 4 hours but they stopped it at 1 hour. He was supposed to go down for a CT scan around 9am but I asked them to wait until he got up on his own. He did around 9:30 and they finally fit him in around 11:30. All and all he had a pretty good day. He was fairly cheerful for the bad night sleep and all. So before we headed down for the scan the resident can in and told me that they wanted to try and finish the IVIG treatment. There were going to slow it down to about 5 hours and they gave him different pre-meds before. He finished and was de-accessed about 7pm.

Now back to the scan. It went very quick and Cody was great. He was very still and we were in and out in 10 minutes. I really didn't think about the results today. I was focused that the IVIG would go without a hitch. As we were sitting in his room playing Wii, Dr. Abu-Gosh came to the door and asked if we could step out of the room to talk. I knew instantly that there was a problem. She gave me that look and told me that she could see 4 or 5 spots on each of Cody's lungs and one large spot around his wind pipe. I felt as though someone just punched me in the stomach. Right now we are going to try and enjoy the weekend and head back into clinic on Tuesday. They will probably start radiation on his throat area in hopes of stopping the advance of the large spot. We have to watch his breathing and pay close attention to his swallowing.

I wish I had better news for you all but I don't....

Thanks for stopping in...

A new day...

2009-01-27T19:29:00.003-05:00

Well Cody just finished his last chemo of this cycle. He is in great spirits. He hasn't mentioned his feeding tube once today. His bilirubin is just about the same as yesterday and there is very little change in the rest of the numbers. He will be getting IVIG (Intravenous immunoglobulin) at 3am and then he will be getting a CTscan of his head and chest around 8am or when they can fit him in. After that we are out of here! :) He then has to come into clinic on Friday.

As suspected the insurance company rejected the Cyber Knife procedure. Dr. Shad said that is the norm. We will appeal and she hopes it will be approved. Isn't it just crazy?

I asked for a little more definded goal as far as the feeding tube goes. Dr. Shad said that the goal is about 5 pounds. We will be hooking him up at night from 8pm to 8am. The hopes is that he will eat during the day and with the night suppliment he can put on some pounds. One of the double edged swords with Cody is that he is very active and gets around very well. The only problem with that is, he burns calories... Just can win right? Well I have to post now because he is demanding that I play a castle fighting game with him. I have yet to win at this game.. LOL

Rough morning...

2009-01-26T12:19:00.005-05:00

Well, Cody had a pretty good night sleep but that didn't seem to help this morning. He got up about 8:15 and we headed down to have his radiation treatment. He did very well and we finished pretty quick and came back up to start his feeding tube procedure. The process it's self went without a hitch. When Cody awoke he was none too happy. The feeding tube really irritates his throat. He is demanding to have it taken out. I've tried to side track him but he will have none of that. He just cried himself to sleep so we will see how he is when he wakes up.

I have no news on his blood numbers yet. As soon as I get them I will try to post. I'm a little discouraged though. We can tell a lot about his liver by looking at his stool. When he is having bilirubin issues his stool is very light in color. Well this morning he had a bowel movement and it was very light in color.

It's times like these that I feel so helpless. I hate making him go through all of this. It's just crazy... He has been through so much already.. If we end up taking this tube out it means that he will have to get a button place on his tummy. That will be the access to a feeding tube. I loath the thought of having another hole put in his little body... It's just not right...

Just wanted to let you all know what his blood numbers are. Well as suspected his bilirubin numbers are up to 16.4 as well as all of his other liver numbers are back on the rise. The doctors seem to really be at a lose. They have nothing firm to point at, just the suspicion that it has been drug induced and we have to wait it out.

It's been a very long day. Not only because of what Cody has gone through but Georgetown in general. Many of the nurses we know and love are gone. Some have left for other hospitals. Some are doing the traveling nurse gig and some are in different departments. We still have some of the nurses. The doctors are all still here and we have the art therapists that mean the world Cody as well as Diane and me. One part that really seems to have hit a big time low is the food service. Many of you have heard me mention it before but when you are in-patient you are pretty much at their mercy. It seems that the weekend doesn't really matter much to the people they contract the food service out to. It's like they all leave for the weekend and don't really care much about what happens there on the weekend. Yesterday Diane ordered fish sticks for Cody and they sent up a piece of fish. That's right, a piece of fish. No side dish, no dessert, just fish and milk. This is dinner for a 6 year old that you are trying to get to eat. Today they sent breakfast to Cody but he was NPO - Non Per Os (Latin: Nothing by Mouth) because he had sedation for the feeding tube procedure. For lunch they didn't send him any lunch at all. I had to try and get Cody to eat some microwave lasagna. As of 6:30 this evening they still had not served food. There are two reasons I going off on this subject. First, it's because all of this stuff builds up and this is my stage to say what's on my mind. When families are in this position and they are worried about their critically ill child they shouldn't have to worry about this crap. The second reason I'm bringing such attention to this is because my friend Jeff works at Georgetown and I know he reads my blog. He will make a point of bringing these issues to the attention of the proper people.

Tomorrow Cody will have his last chemo of this cycle and his last radiation of this cycle. The doctor hadn't come to talk to us before I left so I'm not sure what the plan is.

I'm tired and I need a shower. Thanks for listening to me.. I hope I have better news for you all tomorrow.

Quick update....

2009-01-25T14:49:00.002-05:00

I spoke to Diane earlier today. She told me that Cody's bilirubin went back up to 14. The doctor tried to reassure her by telling her that this often happens. When things are going to turn around they often fluctuate back and forth. We hope this is the case. I will let you all know tomorrow when I find out tomorrow's numbers.

Thanks for stopping by and praying.....

Update...

2009-01-24T21:29:00.002-05:00

I just got home with Justin. He and Diane came down and Justin spent a few hours playing with Cody before I left. Today was a pretty good day for Cody. He got a chance to sleep in this morning. He had a noon time X-ray which we don't have any info on yet. As far as his liver numbers go, I have good news. When his bilirubin was checked on Wednesday it was in the 17.s. Yesterday it was in the 14.s. And this morning it was 11.4. We hope that this trend continues for sure.

Cody's chemo and his radiation on the right leg will end on Tuesday. We are not sure how his body will react to this half dose chemo. In the past we have went home until his body hit ground zero and he got a fever. The last time he had chemo it was a hard session right before he started 3f8 and they made him stay until his body recovered from the stem cell rescue. With this session being half dose, I hope he doesn't hit rock bottom and his liver fully recovers. We hope and pray that things keep heading in this direction.

I hope to get a few pictures while he is in the hospital. I'll post them when I get them.
Thanks for stopping by..

Cody started today...

2009-01-23T21:24:00.002-05:00

He received his first of 5 chemos administered around 6pm. It is half the dose he would normally get because they are being very cautious with his liver. Cody is in good spirits and playing Wii right now. We are glad they got started today. It appears the radiation is doing it's job on the right leg which they have been treating. But, on Wednesday he started complaining about his left leg and we believe that the neuroblastoma is progressing rapidly. He will be going for an X-ray tomorrow to check out his leg. Also, his liver numbers came down slightly today. We will be watching them very closely.

I must admit, this is one of the most stressful admissions on Diane and me that Cody has had. We are really walking the tight rope here. He desperately needs this chemo to stop the onslaught of the beast. But on the other hand we really don't know how his liver is going to react to all of this. It has also been decided that he is going to have a feeding tube placed in his nose. Although this is not a very popular thing for him, we all agree he needs one right now. His appetite has really taking a hit and he can not afford to lose anymore weight. We are not sure if it is because of his liver issues or if it is one of the meds we are giving him to get his liver going.

I will keep you all posted tomorrow when we get back results of the blood work and X-ray.

Thanks for dropping by.

Chemo postponed.....

2009-01-21T16:21:00.002-05:00

I had just got on the road headed for Georgetown when I got a phone call from Diane. They have decided to postpone Cody's chemo at least until Friday. His liver numbers are even higher than last week so they didn't want to take a chance and damage the liver even more. The theory behind this idea is this. Diane thinks Cody looked worse on Sunday and he is looking better since then. The doctors hope that his liver numbers crested on Sunday and are heading back down. I guess we will find out on Friday. He still has to go in for radiation tomorrow but that is it. Par for the course you know?

It is with a heavy heart that I mention the passing of a very good friend. Steve Thornton of Louisville, KY died as a result of a camping accident this past weekend. I ran many races with Steve and his brother Pat over the past couple years. Steve is the guy with bib #6420 standing directly behind me in this picture from the Virginia Beach 1/2 marathon in 07. Steve was always making trips up to Virginia to help with a yearly charity event and run races or just hang out with friends. He was a very good man and will be missed. My prayers go out to him and his family...

Update...

2009-01-20T07:29:00.002-05:00

I just wanted to drop a line and let everyone know what is going on. Diane will be taking Cody in tomorrow to start chemo. It has been determined that he will stay in for the duration of the treatment because of his liver issues. His bilirubin numbers on Friday were as high as they have ever been. We are hoping that they are swinging back in the right direction by tomorrow. He seems to be acting OK but his appetite is taking a major hit. It has become increasing difficult to get him to eat. So, he will start Wednesday through Sunday. I will relieve her Wednesday evening and do our usual 24 hour shifts.

Ounce again I'd like to thank all of you for being so supportive. It means the world to us that you all stop in and check on Cody and the family. Bless you all.

2009-01-18T23:07:00.006-05:00

The Steelers Win!!!!!

Super Bowl Here We Come!!!!!

The whole Johnson Family sat and watched the game together...... We had a great evening... Go Steelers!!!!

Some info......

2009-01-16T13:46:00.004-05:00

Well as you have noticed I have been slacking when it comes to posting. There have been a few things going on since I posted the last time. Cody had to spend the night on Wednesday because they did a live biopsy. He fared pretty well through the process. They wanted to keep him overnight to monitor his blood pressure and just in case he had any bleeding. The liver is a very vascular organ. I wanted to get the results of that test before I posted again. So I took him in this morning for his 4th radiation session. We also went in and had blood drawn to look at his liver numbers. His bilirubin has been very high and he has not been able to start chemo until they have determined what it is that is causing it. His skin and eyes have a yellow tint to them. The problem is the liver is what processes the chemo and if it isn't working he will develop high toxin levels in his body from the chemo. So the results of the biopsy are such that they don't see any infection or other byproducts of a very serious condition that could have been causing this problem. All the liver experts got together with one of Cody's doctors. They have come to the conclusion that this problem was drug induced. Meaning, there was something Cody has been taking that has put his liver in this condition. We all think it was the Beta Glucan that he had to drink before his 3f8 treatments. That being said Dr. Gonzales has found a chemo drug that Cody has had before and he tolerated it pretty well. This drug is activated in the liver but processed out of the body through the kidneys. This is ideal. He will start chemo treatment next Wednesday. He will get the first infusion at the clinic and then he will be able to get the rest at home. After 3 weeks he will have a new set of scans and we will determine how the beast is responding to the treatment.

Now lets look at the bigger picture here. Between all the scans, liver biopsy and bone marrow biopsy this is what we know. Cody has no trace of neuroblastoma in his liver or any other organ in his body. They have found traces in both legs and in his pelvic bone. This is a very critical stage. He must begin chemo to stop the advance of the beast. Everyday that goes by this disease is multiplying and growing.

The future does not look good for our boy. I know the track record of this disease and I've seen others at this point in their treatment. I have not given up hope but hope is now dwindling. We are running out of options for treatment. There is no silver bullet or cure in sight. We are now at a point when we ask ourselves and the doctors "when do we just let Cody enjoy the time he has and let him be a little boy." I want him to have time without being pocked and subjecting him to all the medicine and procedures. I want him to physically be able to enjoy life without struggling.

This is a very hard time. Please excuse me if I don't post everyday.

I thank you all very much for checking in and praying for Cody. Please continue...