Two Thumbs Down

This is my first post on the topic of "Thumbs Down" (I will also have some Thumbs Up posts).

So, two thumbs down for the COG! The COG is the "Children's Oncology Group". Many hospitals, like CHOC (Children's Hosptial of Orange County), CHOP, CHLA - and many more, belong to this group called the COG. Collectively, they run studies and prescribe the same treatment for the different cancers that they find. Overall, this is a good thing as no single hospital is going to see a bunch of rare cancers, but collectively they can collaborate and make advances. So why the thumbs down?

Neuroblastoma had been typically classified into different stages; Stage I, II, III, IV, IVs, and Stage IV high risk. Eden, like many kids, was Stage IV high risk - which is the highest risk category and receives the most toxic therapy of any cancer (kids, adults, etc.) Survival rates for Stage IV high risk were 30%. The dirty little secret was that there was an even higher staging called Stage IV Ultra High Risk. The data that the COG had was that virtually 100% of the kids that received the Stage IV High Risk protocol but were actually Stage IV Ultra High Risk would relapse - and there is no cure for relapsed neuroblastoma. Eden would have been in the bucket of Ultra High Risk. So in a nutshell, what this means, was that somebody at the COG (the study chair) knowing allowed the most toxic therapy ever to be delivered to a bunch of kids when they knew it would not work. I had a little debate with another parent (parent of a survivor), and this person's response was "what other therapy could they offer"? This is really sad - I personally think it's criminal. Somebody could have just said that we don't know how to cure these kids - then parents could immediately look outside of the COG at more research oriented hospitals like Sloan-Kettering, St. Jude, etc.

If I posted the above entry on Eden's website (which has a much larger following), I'm certain that I would receive a handful of emails from parents arguing my point is invalid. I'm also certain that all these emails would be from parents of survivors - there is a big divide between parents of survivors, angel parents, and parents in the relapse battle. Anyway, I'd be happy to debate my position anytime - what the COG did to the Stage IV Ultra High Risk kids was wrong (and I'm going to stick to my position that it's also probably criminal - reckless endangerment!)

Thanks for reading - I'll have a Thumbs Up post soon!