Eenie, Meenie, Minie, Moe...

Experts are amazing. They can look at something 100 other people look at and tell you 100 things that not one of them noticed. I am not an expert in anything, I don't even have a discerning eye for anything specific, but that's okay, because I appreciate a LOT of things. I am not an expert cook, I don't have a terribly accurate sense of taste, or a very sophisticated palate, so no one should ever be afraid to cook for me--I like Kraft Deluxe and even a well-made Hamburger Helper dish (I do not like Easy Mac and no weird ground beef!). I can't tell good art from bad, but I appreciate most of it, and I don't have a good ear, so I appreciate lots of shows others may pan. Not everyone can or should be an expert at everything because life is too short not to appreciate the heart and effort that goes into a lot of things that are less than perfect. But there are people who can identify flora and fauna by the tiniest trace of a seed, a footprint, or a sound, and doctors and pathologists who can find things that no one else can.

The key is finding them. How do you know when you need an expert, and how do you know when you find one? We buy art because we like it and go to shows we think we'll enjoy. We never consider it an investment and we do not keep a cultural scorecard that requires we see at least five of the best performers as ranked by ________ (I have no idea who might do that.) every year. When we need our eyes checked we go to the optometrist. Our family has three and they may not be the best in Columbia, but none has ever disappointed us. We also have good hospitals, three of them, and several specialty centers filled with good doctors--some of the best in the world--in their specialty. And that's where pediatric cancer gets a little dicey.

We have great pathologists and a great oncologist, but we only have one of those--she can not possibly be an expert at EVERYTHING. Nor can any of our pathologists be experts at pediatric solid soft tissue tumors. There are less than 15,000 cases of pediatric cancer every year and about half of those fall in the leukemia and lymphoma families. Of those 7500 cases, less than 5% of them are lung tumors--less than 50 cases per year, how many pediatric lung tumors could our pathologists ever have had the opportunity to examine? So we looked for experts, we found one, the first ones with the PPB registry. But admittedly, their expertise is PPB, and they found us another expert, one who deals with pediatric tumors, then we found the some sarcoma experts, and now we have three votes in, all different diagnoses.

I am going to wait until we get the fourth to lay them all out, but we called our own "tumor board" on Tuesday. We called three friends with cancer expertise and over tortellini and wine, we examined the pathology notes and two diagnoses and raised a few questions. Our third consult, Dr. Vargas delivered the third opinion on Wednesday which led us back for another CT scan (Which was clear as far as we know.) and a review by another specialty surgeon in town, which has not occured as of yet. But when our final opinion comes in, hopefully soon, what will we do, how will we pick? Our hope is that we get two votes for one diagnosis, that will make it a lot easier, but otherwise, will we toss a coin?

The thing that is most striking to us, though, is the crazy amount of information that exists, and still the startling lack of knowledge, and the time it takes to wade through those volumes. While there may only be 50 pediatric lung tumors every year, all 50 of those parents are faced with the same situation we faced. If I were a single mother in rural northeast Missouri who was told my child had PPB, what would I do? What would I read? Who would I call, and with what time? Every child deserves the best chance for a right diagnosis and quality care, and if we are truly a compassionate society we have to make that happen.

Bo will get that care, thanks to all of the amazing people that have helped, through our great University medical system, research, prayer, and support. We are humbled by that, but troubled that there are others that have to face this incredible situation without that same level of support through no fault of their own--no child deserves less. Things happen for a reason, and I am thinking that in some way, Bo was chosen to face cancer so that I, and or someone close to me can help carry the cross for others like us--I know all the right people with all the right skills talents and compassions.

I will post an update when we get our consult from Sloan Kettering, but I am not sure when that will be. We are really hoping to hear something today. Thanks again, everyone for everything, Lisa