Shades of Gray

I went to a weird college. Carnegie Mellon University is home to the geekiest geeks and the artsiest artists--which makes for the most eclectic combination of people you could ever assemble and at 4500 undergrads (That's what it was when I was there anyway, and as a tour guide, I am an encyclopedia of weird facts about my school!), you know all of them. And people go there for that reason, my friend John was a mechanical engineer who went on to operate a music recording studio. And I knew designers who went on to build fighter jet cockpits or become marketing executives for accounting firms--crazy stuff. But the Halloween costumes were amazing. Set a bunch of artistic engineers and technical artists loose on the wildest holiday of the year and you get the best costumes. One of my favorite was "Shades of Gray." Three guys in superhero tights and capes--white, gray and black with 0, .5 and 1, respectively, on their chests. I thought that was hysterical, but that would be nerd humor, I know, I was a geek not an artist.

But life is like that. Sometimes things are black and white, but mostly they are gray--.1, .3, .5, or .8, how can you tell the difference without a pantone guide? As a parent, life is really gray. Every single day I wonder if I did the right thing. Did I do enough, how much therapy will my child need because I made a joke about his lame attempt to climb that tree? And when it comes to medical matters, how do you differentiate between black, white and gray? I am a huge advocate of finding the BEST medical care when life hangs in the balance. But how do you know when life is at stake? We love our ENT/Allergist, I think he is a god, but he is probably not the best--there is always someone better, right? But when Bo needed his tonsils out, I didn't read journal articles or search for the latest in tonsillectomy technology--that was black and white. Many cancers are routine--some types of leukemia, breast cancers, even sarcomas have standard protocols. But when there is no mold, what do you do?

We have gone around and around the last couple days. Our oncologist is at a conference this week with virtually every other pediatric oncologist that isn't at another conference. One day I may tell Bo's birth story, but it all revolves around our midwives being at a conference--what is it with Bo and conferences? So we talk to people, Joyce, a local mother of a young girl who survived a very rare rhabdoid tumor recounted her experience at St. Jude's and said "you only get one chance." And unfortunately we live in a town with way too many doctors who all have great advice. So on the eve of what was supposed to be a meeting with our oncologist to go over the treatment protocol, we decide we need a second and third opinion.

Once again we are in a holding pattern. The diagnosis was too inconclusive for us and the pathologists who worked on the diagnosis in St. Louis recommended another pathologist at Dana-Farber with a specific expertise in non-PPB pulmonary tumors, so the slides are being sent for a second pathology review. Others recommended the pediatric sarcoma group at Memorial Sloan-Kettering in NY, so more slides are going there for a full pathology and treatment recommendation. Not that we don't trust our oncologist, we do, but it is our very own University Hospital that has been running a commercial about one of their new centers that goes something like "If two heads are better than one, isn't 14 heads better than 2?" I guess that's how many doctors they have in that particular center--maybe the ad is not all that effective since I can't remember the center, but it works against them in that I feel decidedly cheated that we only have ONE pediatric oncologist! I was telling her nurse (who is also tremendous) today that for all I know they might both be leaving, and then where would that leave Bo? We would have no heads, no heads is NOT better than one!

So we wait, we ponder what it would be like to move to NY for a year, if it comes to that, wonder what we do if we get two new completely different diagnoses, worry, and read more scary articles we don't really understand... If I had known how much work it was going to be, I never would have let Bo get cancer, that's for darn sure! But on a positive note, he is doing really well, almost all healed from surgery and port placement. We have the in-law apartment almost fully outfitted, but waiting to see if we need to move to NY before we spend money on a bed and sleeper sofa.

Also, though we had to leave at intermission, Matt Haimowitz (sp?) played a concert tonight with the MO Symphony and from the one piece he played before the break, it was going to be truly awesome. He is playing another classical concert on Saturday, so you really should go. And we are really looking forward to Time for Three on Monday--three young, shall we call them, alternative, string players will be performing in a chamber event! And Thursday, A la Carte will feature all the Symphony Musicians in chamber pieces and lots of food from their home countries! So much to do, so little time! More after our meeting tomorrow, with love, Lisa