Friday, March 20, 2009

Hello out there!!!!

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.....

24 comments:

Carrie said...

Thank you for sharing an update on you all. You all have been in my thoughts so much.

My heart is breaking for all of you, but most of all, for Diane.

Like her, I am parenting an infant daughter that, unless a treatment can come along, will likely pass away in just a few years. It eats at me every day, even as I type this. I'm so scared about losing her, and although selfish, I have been looking to Diane to show me that she will make it through this and continue to fight.

Also like you, we are considering starting our own foundation, as we are working on fundraising of our own to help with research for my daughter's horrible and debilitating disease.

If you need anything, even someone to talk to Diane, please know I am here. I may not be in your position right now, but I can relate to how you have been feeling.

Sorry for the book...

Carrie
http://www.littlemisshannah.com

Your Friend in Staunton said...

Glad to hear from you guys! I check back on here daily to see if there has been a post, often more then once! Please do not quit blogging on here! It's an inspiritation to keep me going some days!! You guys are so strong and will get thru this in the loving memory of your Angel!! And make sure you go all out with your tattoo! What an awesome tribute! And Cody...even thoough I did not know you personally, I think of you so often! I know that you are in heaven smiling down on your Mommy and Daddy and other family smiling happily at them, so proud of them! Stay strong!!!

James 1:27 Family said...

I cry with each entry on your blog and I don't even know your family. Cody's life matters. His pain will be used to help many others. Diane deserves time, a lot of time. Try to surround yourself with people who build you up and don't hesitate to cut off those that make you feel worse. You need love and support now and don't need to deal with annoyances. Lean on God -- his Son died too. He knows your pain and He's crying with you too. I pray for healing for the hearts of your precious family.

Andy (Max's dad) said...

I know what you're going through right now Mickey. I'm glad to see you pouring your grief into something positive. We all have to deal with a tragedy like this in our own ways. To let you know, there is an NB conference happening in VT on May 21. http://vermontcancer.org/index.php?id=496 Dr Cheung from MSKCC is the keynote, I think I'm speaking there at some time - it will be an exciting conference with some great new research presented, and new trial(s) announced. Please come up if you are able to join us.

Later this year, there will be an important conference at MIT on patient-driven approaches to finding cures for rare diseases. I'll email you information on this offline as it's nothing that is public on the web (yet).

As a fellow angel-father, I feel your pain and need to go after this *&%#$! beast that took your son's life. You can always call or email if you need to vent. I've found that in talking to other angel parents, the closer your situation is to theirs, the more healing you get from sharing stories. Anytime.

Peace to you, Diane and your kids.

Anonymous said...

Mickey and Diane, please know Cody will never be forgotten by his ACCA-NCC family - he's our "little Cody."

I send strength to each of you - just put your arms around each other - you don't need say a word - just feel. Just that simple act goes a long way!

Don't try and get over this - you won't. Just work on getting through it. Life is different now than it was on March 5, 2009 - you need to find how to live as the Johnson family with Cody not physically being there - he is going to always be with you, every minute of the day, you just can't see or hold him and that's the worse part.

Support continues - I stand ready to listen any time you are ready to talk. The shoulders are strong and I love hearing stories about Cody.

Enjoy the first day of spring - go plant a tree in Cody's memory. Everytime you look at that tree you'll smile as you remember Cody!

Hugs to you all, Pat (ACCA-NCC)

Anonymous said...

Mickey:
You are an inspiration in everything you say.
I have been through loss also, and it is such a split between "moving forward" and "remembering". My opinion is that loss is much like a wound that never heals totally - some days it will split open and hurt beyond belief, and other days you are so busy you forget you have it. Most days it will be a nagging pain.
No one can fix or totally understand what you, Diane, or the kids are facing. All we can do is offer small bits of advice and also let you know the 'Johnson Army' is there for you all. Your blog may be a great way to let out some of your thoughts - maybe you and Diane can find a group or a few people that she can open up to on her own. The more you talk about it the more it gets grounded - at least that is how I deal day-to-day.
I hope the blog/website/fund raisers are everything you need them to be.
I would love to see a new motto - Cancer sucks! When you think about it, it really does.

The Gautreau's said...

I have followed your blog for a while, never commented because I never had the words to express how my heart ached for your family, what a beautiful boy! With your determined fight little Cody's death will surely not be in vain. He has taught me so much and I only knew him for a brief few weeks through blog posts and picture videos.
My husband is in the computer programming and web design field, so if we can be of any assistance in this walk let me know.
Stay strong friend.

The Eadle Family said...

Hi. I am so happy that you are dedicating your life to fighting the beast. I am a friend of The Whitts (half12.blogspot.com) who lost their daughter 6 weeks ago to neuroblastoma. Me, and several other women, have banded together and are fund raising for research. To see a cure would be beyond words of happiness. I will help in anyway I can. For Cody. For Tuesday. For Cora. For every child.

mommaof4wife2r said...

i love the idea of cody's crew and i am so happy that you are dedicating the funds to research. i am soooo for supporting that...and we have already done neuroblastoma research donation drive once this year...and i will plan to host another on my blog to get more word out and me and hubs will do a donation to cody's crew...

i am so glad you are keeping this blog going...it's so important. i'm glad to be able to be a part of it!

sending prayers and love to you all in this new state you are in.

Cameron said...

I continue to think and pray about you and your family each and every day. My heart still hurts for all of you. I think the tatoo will be a beauitful tribute to Cody, your angel. And I will NEVER FORGET! I promise to help out any way that I can.

Much love,
Mary

Samantha said...

You don't have to worr, Cody will NOT be forgotten... neither will all the little ones whos lives were taken too early because of "the beast" I am so happy to hear about Cody's Crew. I definitly want to be apart of that crew! I can't wait to hear about and be apart of the fundraising opportunities. I would love to help in any way I can. Take care, all of you...

Anonymous said...

Mickey & Diane,

I would also like to help if I can, I don't get around like I used to, but maybe I can help from home, place phone calls for you, stuff envelopes, whatever you can think of.

L.H.

Monica Cassier said...

I hope this activity for Cody's Crew will help. You are strong Mick; I worry for Diane. She was so strong for so long and I know she is devestated at the loss of Cody...I pray she can work through the grief - it'll take a long, long time, I'm sure. I hope she can find a support network, group, or therapist who can help work through this... give her big hugs from me!
moon

Lisa said...

Hello...

I've been following you for some time now...came over from RW link.

Just recently the World Community Grid added a new project - Fighting Childhood Cancer - Neuroblastoma.

The World Community Grid is a way to link your home computer...actually let me just cut and paste its description:
How Grid Technology Works
Making a difference has never been easier! Grid technology is simple and safe to use. To start, you register, then download and install a small program or "agent" onto your computer.

When idle, your computer will request data on a specific project from World Community Grid's server. It will then perform computations on this data, send the results back to the server, and ask the server for a new piece of work. Each computation that your computer performs provides scientists with critical information that accelerates the pace of research!

When I saw that they added Neuroblastoma as one of their projects I loaded it onto my computer!

I know....sounds sketchy to 'add' a program to your computer but its safe and I work for the company that sponsors it.

Here's the link for more information:
http://www.worldcommunitygrid.org/index.jsp

Maybe it's something you can add to your website?!?!

Prayers and thoughts for your family!

-OKAZNC (RW)

Anonymous said...

I just wanted to let you know that we will never forget Cody or all the other children who are suffering from the beast. You have our support, now and always. I do believe that Cody see's what you and Diane our doing! God bless your family now, and always!

Grace

Anonymous said...

Cody WILL live on in memory; this I can assure you.

And he will live on through Cody's Crew; which will surely bring other people to know of/be aware of him, his story and his fight.

His teachers, too, are going through a special kind of grief; not the same as family or a doctor's but it's tough.

Anonymous said...

p.s. I meant to say (of teacher's grief) "...it's tough and it hurts".

Anonymous said...

As you can see, you are not alone. Though none of us have the exact same experience-others do have some things in common.

And some people, without losing a child, even; realize how difficult this continues to be...and will be for a long time.

If Diane can find someone to connect with (I suspect she could use someone to validate and share in her grief-my apologies if I am wrong), it might help relieve a little of her lonliness feeling.

Just my 2 small cents...

Anonymous said...

As you can see, you are not alone. Though none of us have the exact same experience, some have something in common.

Also, even without losing a child, people realize how difficult this continues to be...and will be.

I think if Diane can find someone to connect with (I suspect she needs someone to validate and share in her grief-my apologies if I am wrong), it will help a little of her lonliness feeling.

Just my measly 2 cents...

Anonymous said...

ooops, sorry for the dupe comment. I can't delete.

Anonymous said...

We have been thinking of you all since we returned home. We absolutely will not forget Cody or how important it is to fight against the beast. We are "in" and will support in any way we can.
Sending our love,
Kelsey, Shawn and the kids

Glorybelle said...

Mickey, I can't wait to see the new website, the tattoo and the jewelry. All of you are in my thoughts everyday and will continue to be! Please offer a hug to Diane from me... another mommy far, far away.

A former co-worker of mine from the police department put information about Cody on her website. Here is the link. http://hopelesslyromanticcharities.com/?page_id=4

Just know that so many people from all over the place are thinking about Cody and all of you. Cody will not be forgotten!

I am looking forward to raising some money for Cody's Crew Foundation. So yes, please keep us all posted and updated.

Anonymous said...

Mickey,

I have followed your blog for some time. I want you to know that even though we've never met, I will never forget Cody. Your story of parental love has inspired me to not take what I have for granted.

You have made me a better parent and I want to thank you. I have cried over your words many times, and continue to do so. My heart truly breaks for you and Diane.

I wish you so much healing in your future, both of you, as well as your kids and extended family. This is an unimaginable grief and I cannot believe anyone must endure it.

Sending you healing thoughts and best wishes from CT....

Kelli said...

God bless you all and keep us posted on the new website. I will link it on my blog when it's up and running. Many hugs and prayers to you from the gulf coast.