Tuesday, May 25, 2010

And then the other shoe drops...

How does it go, "The good Lord giveth and the good Lord taketh away."  Well, I guess in our case, the good ole government giveth and the good ole government taketh away.  Or more appropriately, the FDA giveth and taketh.  What the heck am I talking about?  Well, we got a call from our doctor at Stanford (we'll call him Dr. A) last week and he informed us that because we didn't have an official "genetic" diagnosis for Piper, the FDA is not going to allow her to participate in the drug study.  Needless to say, we were not happy with this news.  Now I'm going to get into some of the scientific mumbo-jumbo to explain this more in detail, so if science gives you tired head, then all you need to take away from this, before you skip to the next paragraph, is that the FDA is a bunch of lazy assed, incompetent, pencil pushers who are more interested in collecting their union pension than doing their job and probably can't find their F'ing DA from a hole in the ground.

Tuesday, May 18, 2010

On the surprise ending

Well, it looks like my definition of "tomorrow" and yours is probably different, but here is the news you've all been waiting for.  About 3-4 weeks ago, Belinda posted about Piper's condition on a website where you can post questions and Dr's will read and provide input/answers to your questions.  So after Belinda posts a question about Piper, she is contacted by a doctor at Stanford University who is researching mitochondrial diseases (including Leigh's.)  One thing leads to another and it turns out he is leading a trial for a new drug that is showing some promise helping children with Piper's condition.  After talking with him some more, he tells us he want to include Piper in his study.  Now from what we've been told, they had another, unofficial study with about 1/2 dozen patients that showed "remarkable" progress as they went through the study.  This time around they are an official FDA approved study including about 3-5 children and Piper will be one of those.  We are still working out the details, but hopefully in the next couple weeks Belinda and/or I will start taking weekly flights to Stanford to begin treatment.  We're not getting our hopes up (at lest not a whole lot) but it is wonderful to at least have a way to fight back.

On a somewhat related note, without the tireless efforts of researchers like our Dr. at Stanford and Dr. Pascual (our specialist here in Dallas) these potentially life saving treatments would not be possible.  If you want to be part of the team striving to find a cure, you can help by visiting www.childbrainfoundation.org, a non-profit organization run by Dr. Pascual and his wife Albertina helping to raise money for research.

Wednesday, May 12, 2010

We're back!

Hello all!  Sorry for the long absence, but with apartment living, crazy work schedules and even crazier babies, I haven't had all the time I've wanted to keep the blog updated.  So, I'll give you a quick recap on our latest events (with a surprise ending.  ooohhhhhh!)