Thursday, July 5, 2007

6:25 AM 7/5/2007

Well, this is a different way to start a diary entry but I jut could not help myself. Yes, for the second year in a row the Dungan twerps won the "Most Patriotic" award at the local Fourth of July parade. A daddy can only be so proud. Of course, I have to be honest that I wasn't so supportive when I was outside at 7:00 AM on a holiday cutting and taping individual strips of paper streamers to the bottom of their Escalade. None the less, it made for a moment of pride as we accepted our prize, a dinner for three at a local eatery. It wasn't all roses however, midway through the parade route (a loop around the park) Sydney somehow became gas pedal incompetent and I had to push them up hill the last leg of the loop. It wasn't until later when Graham was driving that I discovered that the Escalade was perfectly fine and that I had pushed it around for nothing. Regardless, we had a good time and it made for a great holiday morning.

Believe it or not I am still recovering from last week. The funny thing is that Pat is really the one that does all of the work. I pretty much just stand around and socialize. I would say that I am the beauty and she is the brains but everyone pretty much knows that I would not qualify for either one of those titles. Pat simply does incredible work putting on the conference and she does it so well that everyone has time to do what they came to do in the first place - meet other families, talk to the experts, and learn about neuroblastoma.

Some of the most interesting things to come out of the conference were actually unplanned. Although the speakers did an excellent job of presenting all that there is about neuroblastoma, there were some important "facts" that came to light. One of the most interesting was a debate over the survival curves presented by Sloan Kettering as opposed to the rest of the COG. At first we were all led to believe that Sloan enjoyed a 60% survival rate whereas as the COG only provided a 40%+ rate of survival. These statistics have been debated for years. I must admit, although I should have known better, I felt a little duped by these statistics. As it turns out, these two statistics that everyone tries to compare aren't actually the same. In fact they are entirely different. The results of the MSKCC's experience was not exactly comparable with the COG information as MSKCC reported Progression Free Survival vs. Event Free Survival.

Progression Free Survival (MSKCC) - showed only those patients who did not have progressed NB. If, for example, a patient had significant liver, kidney or other toxicities, they were not represented in the MSKCC number (an event does not always equal progression of NB disease)... and thus, the number could be deemed a bit "optimistic" if you will - thus the 60% vs. the 40% or so (note, I am pulling that from my head... not referencing any slides) reported by COG for Stage 4, N-myc amplified did not tell the whole story.

Event Free Survival (COG) - showed all patients enrolled... as any toxicity which would result in pulling a child from a protocol would be considered an event and thus the results would be lower.

In the end I don't really know that there is any difference between the Sloan survival curves and that of the rest of the COG. By the time that you factor in all of the variables that make the two statistics different I think you might find them to be eerily similar. As always it just is not clear. There is no absolute answer. We, as parents, just have to make our best decisions and hope for the best.

This is what purpose is all about.

No comments: