Thursday, January 19, 2012

ACS - Stress - Back to Basics. Lets do this

Ok. I have allowed the situation with the ACS stress me out to the point I am physically ill. So I need to back off a bit and get back to raising awareness in an appropriate way to Neuroblastoma.

I just want to mention 1 thing. I am no longer calling for the resignation of Andrew Becker. I am calling for him to do volunteer work at his local children's pediatric cancer ward. He must have good qualities - I have to believe that. I am also someone who can make a difference. and will. I saw the entire situation kinda get out of control. We were all very and deeply hurt by what he wrote in his blog. But we can use that hurt to do something very good for childhood cancer. It brought a lot of attention to a lot of situations. How the ACS allocates its funds.. how little awareness there really is out there about childhood cancer... How many families truly need help that are battling childhood cancers. Lets all regroup and make this work.

We can all make this a win win situation.

My emotions are so raw right now and I can use those for something good. Not bad. Today I cried a lot because I miss Saoirse so bad. I miss her smile. I see it in my minds eye. I miss her voice. I hear it in my minds eye. I miss her smell. I smell her in my minds eye. I miss her laugh. I hear her giggle in my minds eye.

Deep breath.

I cry when certain music comes on. I still feel like I am in a time warp. Sometimes I wake up and ask.. did it really happen?

I still wake up thinking I hear her in her room. I still make a point to pick things up off the floor so she doesn't eat it or step on it. (although she never really did that.. if Saoirse found something on the floor she was pretty good about bringing it to us. Thats what we taught her) I still make a point to be super quiet at night when I get up to pee in the middle of the night. I am not sure if that will ever go away.

After seeing some pictures of children going through treatments, I am feeling a great sense of motivation to get this business started. I wish I could put it online.. but just not prepared to do this yet. We do have an appointment with a manufacturer next tuesday. I need that quote so I can complete our business plan. I need help though. These are 2 products that will help every child and most adults. It is already a small demand and we need to get it out there. We will.

Once I made the decision to get back to my focus, which is raising awareness for Neuroblastoma.. I felt better.

I will write more later. I want to thank everyone who reads my blog. Your feedback means a lot to me and I read every comment. I wish I had time to respond to everyone. Ug.. we really need an assistant.


  1. Mike,

    Keep up the good work, youre a good dad.


  2. I admire you. I can't think of much else to say, keep up the good work. I believe your daughter is carrying you through this. She is so proud of you! I can't wait to hear about this product and spread the word! I figure that's the least I can do. One day at a time. One deep breath at a time. Hugs from my family to yours

  3. I read all your posts and Kezia's and follow you on FB as well. I was inspired to also post to ACS's page. As for a proper avenue for pediatric cancer funding they are poor. I then got an idea, it could be crazy, but it is another place that it could not hurt to try for awareness. Call me crazy but here it is: I think of you guys as a grassroots advocacy and I purchase lots of good smelling stuff from The Body Shop, and they support grassroots organizations of different topics and try to help the planet too. I just wanted to pass along to you that maybe The Body Shop would be a good company to contact about getting maybe a special product that when purchased, proceeds go to (fill in the blank) small pediatric cancer advocacy group. If you read through their about us page, they mention that they have a partnership to raise awareness for HIV/AIDS in young people, so it got me thinking why couldn't they do the same thing for pediatric cancer?

    That is the site with the history that mentions it. Like I said it was just a thought, and since you do read all the comments, it was the best way to get this idea to you.

  4. I look forward to when it comes out. And when it does, maybe the power of the social networking can help launch this thing to heights you never expected, and raise the roof on awareness while bringing in funding to help the babies and their families that are fighting this fight.

    I pray you both have good dreams that leave you filled with a sense of peace.

  5. Love the idea of Mr. Becker getting back to the basics and volunteering. I saw where you had written a letter to Ann Curry for the Today show, GREAT letter, hope you get a response.. Didnt know if you saw that with Kathy Lee and Hoda on the Today show, they have a segment called Everyone has a story..Figured you might want to send them a copy of your letter.

  6. I may not reply to all of them, but I do read them all.

    I'm glad you're focusing on the good. Funny about the business plan --- I taught a class on business plans tonight. Let me know when you're done w/the next step & I'll help you develop it further.



  7. I am glad you decide to focus on other plans that need to be worked on which is very important. We all are with you two.

  8. Mike- I accidently found your blog tonight, through various pages I clicked through on facebook. I just spent the last half hour bawling my eyes out. I was diagnosed with brain cancer when my oldest daughter was 6 months old, so cancer stories hit home for me. However, I have never had a close look at childhood cancer until tonight. I can hardly breath right now grieving for you and your family. My 4 year old (who was 6 months old when I was diagnosed) and my 11 month old are both sleeping in the next room right now and after reading your story I want to go wake them up and hold them forever. I am going to like your facebook page and several of the other childhood cancer pages I came across tonight just to prevent me from forgetting this night and how touched I was. I honestly believe that what has happened with Becker will prove to be a huge eye opener for many people about childhood cancer. I sincerely wish you the best in your business endeavor.

    Prayers for Healing,

    1. Emily, I was moved by your post. You, perhaps, should also look at Kezia's blog. The link is right here on Mike's page. And Kezia has a twitter account as well!/newmomnewcancer. What you say, is what has happened to so many. The Fitzgeralds brought a reality to childhood cancer, its brutality, its suffering, its torture for children and their families. This reality is far more powerful than any picture of cute children with bald heads that you usually see in ads. This reality is moving and motivating... If you can, please share the link to their blogs and fb page so that even more people can become aware and, perhaps, take action. To increase awareness, fundraising,..everything. Awareness=funding=research=cure.

  9. Mike, excellent letter. I hope some media outlets are intrigued enough to want to pick the story up. It is great that you are getting yourself to a place where you can channel all that the ACS blog made you feel into a good purpose. I said before that I thought that what Becker did would be the best thing for childhood cancer awareness and funding. You, hopefully, can make that a reality by being rational and allowing the media to see a story with more depth than just a stupid comment (Becker's, not yours!). Strength to you in that.

    And, can't wait to hear more about your business and the foundation. Here to help in any way I can. Thinking of you both every day as always,

  10. I think you and everyone else had a right to be angry. It was a fairly callous and insensitive blog to write and its 300+ comments of outrage were rightly justified. But I agree that anger can take you and consumer you if you allow it to. I thought this is an excellent opportunity to bring awareness to the issue of no funding and knowledge about pediatric cancer...although a horrible way to get it, I believe it has great potential....And I think you are doing great. Just take one day at a time. I had seen a youtube video about grieving the loss of a child and can't seem to find it now...but it was several parents talking about how they felt and how no one really knows what it feels like, etc...but more importantly it talked about how they were able to cope and deal with each day. I thought of you and Kezia and thought you might like to hear it but can't find it now (perhaps its for the best). There is not a day that goes by that I don't think of your little daughter. She has definitely impacted my life for the better.

    Praying from Utah!!

  11. I read all your blogs and Kezia's too and ofcourse your facebook page. I hope you get to start your business and foundation soon. Would love to help out in any way I can. Saoirse will always be in our hearts.