Sunday, May 19, 2013

A Fathers wish and frustration.

Ok. I am sure there are not many people reading my blog anymore - thats ok because I haven't published my writing much. I do write, just don't publish much.

I need to publish this though. I saw how there is state police in another state selling t-shirts and raising money for the boston one fund. I get that the families need help. Seems there will be and is plenty of help.

What gets me is there were a lot of stars who showed up for special concerts to raise money, extra media coverage and people keep pouring money into the fund.

While I have understanding and sympathy for the families who lost family members and who were hurt with life altering injuries, I get frustrated because all of the pediatric cancers are getting whitewashed again.  I watched my own child die a very violent death - I see her death every morning at 630 am.

What I wish - A fathers wish - is that some stars would come together and have a special concert for Neuroblasotma - a pediatric caner that kills a lot of kids each year.  Not sponsored by any of the conventional cancer groups because contrary to popular belief they do little for Neuroblastoma or any pediatric cancer for that matter. We need someone to help us raise a lot of money to help kids with cancer. I challenge stars to actually do their own research and do this because its the right thing to do.

Right now Kezia is planning a dance a thon - More details to come soon. She is doing her part, working hard and doing all the work to organize a fundraiser. She could use some big stars to help raise attention and a lot of money for the trial (to be announced on her website this week) they will be funding.

It is a 501 charity and we make NO PERSONAL MONEY from the foundation.

Its the not-for-profit scientist and pharmaceuticals who are working on cutting edge treatments - including NON TOXIC and LESS TOXIC treatments. The government forces you to make your child take Chemo - for Neuroblastoma that is more times than not very deadly.

As a parent - I am frustrated because I hear every day of families struggling, kids in pain and getting sicker and chemo keeps getting pumped into them. No way a child's body can keep up with the poison. The chemo kills the immune system and has no way or encouragement to come back.

Everyone has heard of Breast cancer, colon cancer, pancreatic cancer, lung cancer -

Have you heard of Neuroblasoma? If not, look it up. Pass the word along. Share and help with awareness. What is it going to take to start getting people to pay attention?

Do I need to dress myself in orange and walk across the US?

Come on people.


  1. I agree with you. Cancer in children is always pushed into the back burner. It's pathetic. These children are innocent and too little to have a say. We as adults need to have a say for them. We need to be heard.

  2. Still following, still reading. And, like you, still frustrated with how much attention (and money) will be given to something that is a 'unique' thing that, in comparison, is SOOO much smaller than the annual result of what Neuroblastoma does. I wonder if it is the feeling that people have of connection (aka, being able to relate), or maybe the feeling that their money is tangibly going to help someone. Things to think about maybe. Maybe these factors, if addressed, could help. Sorry Mike, I support you in all that you do and how frustrated you are, but walking across the states orange....maybe not! :) Perhaps there are other ways, but I get the feeling...kind of like wanting to scream from the top of a mountain and actually have people HEAR you. I get it. Keep writing Mike, people are still out here listening....

  3. I'm sorry you are still dealing with so much anger and pain. My 3 year old was 14 months old when he was diagnosed with retinoblastoma, on November 11, 2010, only to find that my husband was a silent carrier of the mutation that causes it and had a 50% chance of passing it on, so 10 months later, my 5 year old, then 3, was diagnosed with retinoblastoma on Sept. 12, 2011, as well. I was so bitter at first, but I have come to realize that all I can do is try to raise awareness. We are incredibly lucky that both boys are stable. We do live with chemo side effects and have that fear of a secondary cancer since they have a mutated RB1 gene. I do know children with neuroblastoma, and I will be honest, hearing that someone has that diagnosis scares me. I do write congressmen, I do raise awareness where we live, I make sure everyone I see knows what retinoblastoma is, because most don't. Before our youngest's diagnosis, I had briefly heard of it once, but was clueless to the symptoms, had I know, our youngest could have been diagnosed at 6 months instead of 14. I am so sorry for your loss. Keep raising awareness on your end. Eventually the world has to wake up and stop ignoring our children.