September 17

Thank you to all our friends and family who have called, e-mailed, and sent prayers our way.  From all of our recent medical consults, this is what we know:  no surgeon recommends trying to remove the tumor.  The analogy I was given is that surgery would be like trying to "drain a bloody sponge."  We also are being told to hold off on surgery in October for the chiari (syrinx) malformation.  This too is likely to be too risky with the recent bleeding.  As far as further treatment, the doctors want to see what the next MRI looks like in about five weeks.  There is a chance we will continue with the vaccine trial.  There is also a new clinical trial opening up that may be an option.  As one of the doctors told me, "we really need a home run."

I recently read "Take the Risk" by Dr. Ben Carson, a neurosurgeon at Johns Hopkins well-known for doing surgery to separate conjoined twins.  He is a man of great skill and great faith, and he writes that before each surgery he tells the parents "Don't worry tonight, worry has never helped anybody. But let's both pray. There are a lot of things in life beyond our human ability, knowledge, and control.  But there is nothing beyond God." 

Whenever I am close to crashing, I look at, and listen, to Clay. He is the happiest person I know, yet he has been given so many reasons to be otherwise.  Today he started working with a mobility trainer to learn how to navigate with a cane.  I walked behind them as he told her jokes, smacked her ankles with his cane, and kept her laughing for the entire session.  He found a baseball on their walk, and in the car he told me, "This is my lucky day."