Tuesday, January 17, 2012

Angry and need to show people what Neuroblastoma does to children

By trade I am an art director in advertising. Although I haven't done it in years, I still have the creative touch. Well, I think this whole experience has tapped my creative juices. I need to get peoples attention to bring awareness to Neuroblastoma. Unfortunately childhood cancers get overshadowed by adult cancers. I will be working on my ad - video and print. It will be graphic and profound. It will get peoples attention. I have got to keep fighting and keep moving forward to bring more awareness to early detection, education for pediatricians and ER doctors on signs and symptoms (i.e., my post yesterday - what I didn't write about yesterday and needed to was that during those few weeks we were trying to find out what was wrong with her she saw multiple pediatricians and not one of them recognized the signs. Again, I will repeat myself here - The signs are classic and consistent. Period. I didn't need to go to medical school to know this. Maybe I should go to Med school. hum. interesting. .), and treatment for better quality of life and a CURE>  Anyway. I am going to relax today after running some errands. Kezia has a head cold and I am sure I am getting it. I will write more later. I feel better today. I am still having anxiety issues but I no longer have medicine to help with that. So now I am trying tea at night to help me relax. It is what it is.


  1. Mike and Kezia, I am sorry for your loss. My son had leukemia and since then has lead me to discover the world of pediatric cancer. I will spend the rest of my life fighting for a cure for all kids who have cancer. I hope your video and blogs go viral to help people become aware that children are our future and we must fight for them even if it is a much smaller number than those with breast cancer. I have a blog and a few facebook pages that I will share your writings on to raise awareness. Visit my blog @ http://briansphirstblog.blogspot.com/ and we will fight together for a cure.

  2. I have followed your story from CNN but have never posted before. I'm sorry for your heartbreaking loss and for all that you have been through. Your family's love, strength and determination is inspiring.

    Your story made me think of a writer named Erin Zammett Ruddy. She has spent the last 10 years focusing a lot of her time writing about young adult cancer (she was diagnosed with CML in her early 20s) and is practically a cancer poster girl. A year or so after her diagnosis her pregnant sister was diagnosed with Hodgkin's Lymphoma at 27. So she has a background as a patient and immediate family member. Also she is also a mom who has an ongoing blog on parenting.com and is featured in parenting magazines frequently. I'd love to see her write about your story and Nueroblastoma awareness.

  3. Mike,

    You have the knowledge and motivation to change things and make a difference


  4. Can't wait to see what you have put together. Always willing to help if necessary. My most productive has been when I am angry, so glad you are channelling it, as much as you can anyway. I have said before that a continual educational program needs to happen for Ped's and ER docs on common early signs. Absolutely mind boggling to me that, something they could easily look up and discover NB to be a possibility they, clearly, failed to actually look up. Absolutely STUNS me. I know SOMEONE always has to be at the bottom of the class, but this disease is misdiagnosed initially more often that it is caught right away. When you have classic signs/symptoms like Saoirse's, there is no excuse, no defence. And its crazier in Canada....you can't see a Ped here without a referral, at least where we are. So, you are left with depending upon GP's. Scary.

    Maybe you can use some of what you have so far, along with the absolutely ludicrous remarks of Becker with the Cancer Society today....it would likely get some press.

  5. I just read the article that Becker has written about bald barbie and how it is not a good idea to spread an awareness, etc. I have to say that many people, including you two and us are angry and sad. I am especially shocked to read that he is saying that childhood cancer is rare. Where did he find that information? I decided to google myself and found that there are common childhood cancers, and NB is one of them.


    Of course, there are rare childhood cancers somewhere. Also, people are saying that doctors, etc are only focusing on adult cancer often than child cancer. But, why is that? Is it because they are saying it is rare or they think it is proprieties to do something about with adult cancer first? We need to know.