Tuesday, May 6, 2008


Lately it seems that I have some type of neuroblastoma function every couple of days. I can't say that I am to blame for all of them but I can tell you that I am extremely happy about it. Considering the fact that many of us never even heard about the disease before Sydney or one of our other children was struck with it, I think we are making huge strides. I know I am right in the middle of it and am therefore surrounded but I am really pleased with the amount of time that I am hearing the "n" word. There is no doubt that we are making progress. Over the last five years I have gone from attending a neuroblastoma event once a year to being to a different one at least once a week. That is how we get the word out. That is how we give the children voice.

A few weeks ago I heard a very impassioned (although long) speech about giving our children voice. It was given by another mother of a child with neuroblastoma. Frankly, it was one of the better speeches that I have heard in quite a long time and, without a doubt, the best I have ever heard that mentioned the word neuroblastoma. In fact, I was disappointed it was not my own. The speech has totally reinvigorated me. It is not that I do not love fighting for children everyday. I genuinely love to get up and meet this monster head on everyday to fight. It drives me. It is how I breathe. It is extremely rewarding because every time we take a step forward I know we are getting one step closer to a day when another child will not walk into this world. I certainly had the passion for the work before but I was missing something. I was going through the motions and was working hard but I was missing some ingredient that I could not put my finger on. This speech gave me that.

To this day I can not put my finger on what was missing but I can tell you that my mind is working like it never has before and my passion for what I do has grown ten-fold. So when I have weeks like this that seem jam packed with interviews, meetings, and engagements I can barely contain my incredible excitement. I know I will have another opportunity to make a difference. I am literally experiencing a revolution in my head. I am so thankful for the opportunity to get to do what I do everyday. As nasty as the disease is and as much as I hate that my daughter has it in many ways I am the luckiest man in the world.

Thanks Ann, for the reinvigoration. I know what you said but I don't really know why it hit home so much or why it has affected me so strongly. Words are powerful. Thanks for giving me my voice.

My purpose is louder than ever.


Vickie said...

Is the text of Ann's speech available somewhere? Many days I need inspiration, too.


laulausmamma said...

Mark...the children and families affected by Neuroblastoma...now and in the future...are very fortunate to have you on their side. You are a powerful force...fueled by love, hope and determination to beat this disease down and out. Thank you for giving it your all.

Mom to Katie - 23 year Neuroblastoma survivor