Wednesday, May 26, 2010

Valerie Fund

I can't help but reiterate how much of a pleasure it is to be dealing with normal toddler issues on a daily basis rather than the hospital crap. Sure, much of it is intensely annoying, frustrating, and - frankly - boring, but it's a whole lot better than the stuff we were dealing with earlier.

Which brings us to the topic du jour: we've been asked to write a sentence or three about the Valerie Fund for some press they're doing. That's difficult, because they are wonderful people whose support system utterly failed this fall and were a primary reason for our mad, desperate flight out to Pittsburgh. Great intentions, not so great execution.

We firmly believe that The Boy's case just grew too intense and complex for them; factor in Younger Bro's birth, and things reache the tipping point much faster than we could have imagined. The Wife asked about the possibility of reduced chemo doses and was told that that wouldn't happen and wasn't a good idea. We got to Children's, and the first thing they did was reduce the doses based on The Boy's kidney function, because the originator of the protocol said that that was the right thing to do. Why didn't our Valerie Fund doctors discover that?

Can you imagine the possibility of The Boy, still in treatment, getting the full doses of those "medicines?" I can, but I've seen way too many horror movies and tragedies. Don't think for a second that, as we became more educated, that I didn't consider the possibility of eventual legal action; not a high possibility, but a possibility nonetheless.

Also factor in that nonsensical rule about the no-infants thing, and factor in the amour of crap that they put my wife through... let's just say that, as I acknowledge the niceness of the people and their sincere caring for The Boy, I also need to acknowledge how their system hurt my family and endangered the health and recovery of The Boy.

Harsh words? Yup. But, richly deserved. They do great things - the holiday party was very nice, and the gifts thing in 2008 was quite nice. The Center itself is a nice place to spend time in a hospital, and the people care a lot about the kids. Sharon is still The Boy's best and favorite nurse, and Laura interacted with The Boy far more than the child life people at Children's ever tried to. They helped ease our transition into being a cancer family - if "ease" is the right word for such a traumatic and world-shaking event. The doctors are caring people who work hard to take care of the patients, and the rest of the staff work hard to take care of the rest of the family through outreach things like their summer camp and holiday party.

But, man... the ball got dropped over here.

- Posted using BlogPress from my iPhone

Location:5th Ave,Pittsburgh,United States

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