Survival Rates...?!?!

Augh! Could we please stop talking about survival rates?

Recently there was a parent NB Conference in Chicago. A lot of the parents who post to ACOR attended and were dazzled by different doctors and their respective trials, treatments and ideas. The doctors are continuously bringing up "survival rates" in relation to their studies and the parents just glom onto this crap like its the word of God himself.

Please stop being bamboozled by these doctors! How long do we have to be in this fight against neuroblastoma before we all realize that some kids just luck out become NED? Somehow they were able to defeat the cancer on whatever treatment they were on - just by luck. No ONE treatment works on all the patients. This cancer is elusive and all the doctors have to attest to that. This crap about MSK having a 60% survival rate with one of their studies is just that: crap.

And while I'm going off I may as well mention that I'm sick of hearing about the "Big-4" doctors bad mouthing Dr. Sholler and her studies. It's hard to believe that in the fight to save childrens' lives there are politics, but there are, and these Uber-Docs are threatened by her, her studies, her findings, her commitment to saving lives without ruining quality of life in the process. (They're worried about losing out on more study patients and money.) Did you know that a certain doc applied for a grant through Alex's Lemonade Stand but was denied? Hmmm... who are the doctors doling out the money from that fund? Look it up.

I know there's a cure for NB - it just hasn't been tried yet. The big treatments only work for a few - and there's no rhyme or reason for it.

I have no graceful way to end this rant. But I feel better...