Saturday, May 26, 2012

NMTRC Symposium, liberation and anger.

We attended the NMTRC Symposium 2012 last week. It is important to us to fundraise for non toxic, less toxic and "out of the box" thinking. We are very involved in the research, we have to be. The reality is, the "standard" way of treatment is not working - it hasn't really changed in 40ish years. Kids should not be getting chemo. I am open to nano technology, which was discussed extensively during this conference, where scientist are getting some amazing results in delivering the right chemo to the cancer cells, virtually leaving the healthy cells alone. This makes it less toxic and can give a better quality of life for the kids. 
I have a lot to write about and will. I want to say that the meeting was bitter sweet. It was awesome listening to all of the doctors, scientist and other key figures in curing Neuroblastoma. My highlight was meeting other Neuroblastoma parents. I need that connection. I need to know I am not crazy. I have good news.. I am not crazy. I miss my daughter deeply. The pain, the loss is completely unexplainable that only a parent who went through a child die of cancer, or who has cancer can understand. 

Meeting all of the Doctors and Scientist was also liberating. I felt complete passion from all of them. I got the impression that this is not just a "job" for them. This is a life's passion. They truly want to help. They all agreed that their research was missing an element though.. The parents.  Meeting us for them was moving they said. It brings another element to the research, the motivation. The deep sleepless nights they have when they are seeing encouraging results in lab mice and rats. They are on the verge of a cure. I feel it. I wish that Childrens Hospital Boston was more about "thinking out of the box". I found myself really beating myself up a lot during this conference. Wishing I had taken her out of that hospital and put her in another trial. I am so upset with all of the doctors who still actually believe that the strong chemo works. Sorry, but stats are stats. Survival rates are actually on the mild decline for Neuroblastoma and still a death sentence for relapse/recurrent Neuroblastoma. And stupid politicians who only do what the doctors say. The childhood cancer arena is absolute chaos. There are wonderful and encouraging trials that are showing results but parents do not have a lot of that available to them. Our doctors were very closed mouthed about other trials. We had to do all of the research and decipher the clinical trial information the government provides. Dell is working on a "cloud" for an all encompassing information cloud for doctors, scientist, and parents. Each having their own portal. This will be huge for terrified parents who's child was just diagnosed. We will participate in the development of the Parent portal, along with other parents. This cloud will enable parents to easily find clinical trials to participate in. It will also allow clinical trials to find potential patients. We were those terrified parents. I can't tell you the sleepless nights we had (and still do) researching trials and a better quality of life for Saoirse. Chemo kills children. Its as simple as that. Now, some kids survive, but almost all have health issues of some kind as they grow up.

I am motivated by my daughter Saoirse. I am motivated by the pain. I am motivated by the love others have for Saoirse and our family. 

More to come. (P.S. - if you are in the greater NYC area and want to come show your support, visit for the launch event on the Plaza of The Today Show where we flood the plaza with posters of kids of NB.) 

1 comment:

  1. You're right Mike, others do have love for your daughter, and for you both. I think you know Saoirse will forever be an Angel I will try to live up to however I can. And I am committed to working hard to making it possible to maximize the 'however I can' part--to structure my world so that I can do so much more to fight NB than I can now. It is too little, too late I know. But, it is not to late to change things for others in her name.