Warning:  this one’s going to be a downer.  Sorry.  I’ve toned it down quite a bit, but the bottom line is that this blog is about life with NF, so I’m afraid I have to share this !@#$% roller coaster that we ride.

NF update: 

Sad, frustrated, and really angry all at once.  Just learned from the doctor running Jane's Gleevec trial that her tumor has progressed more than we'd been led to believe.  Last June we were told it was "stable"; the same a few weeks ago. However, just got an email that they (finally!!) calculated the volume of the tumor, and all told it's grown by 25% over the past year--more than the 20% limit for it truly to be considered stable. Why didn't they do the calculations last June?!? Perhaps it may not have changed what we'd have done for the last six months, but at least I would have been mentally prepared for this end result. I had just started to feel secure that maybe Gleevec was actually going to help us--now we may have to start all over with something new...

Running update: 

Can’t even bring myself to post my running log.  I’m back on track training for Boston, but who cares?  The racing, the fundraising—it clearly isn’t enough…

Jane Update:

Happy, beautiful, smart, kind…and mercifully oblivious.