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Tuesday, February 4, 2014 - 8:43am

Just a quick update to say that Hailey has started her new treatment (RAD001).  It is a pill she takes from home each day.  It's not a chemo, so it's not been making her sick.  We will be doing regular blood draws to watch for other negative side effects, but so far so good.  Now lets hope it works in keeping the tumor at it's current size or smaller!

Friday, August 29, 2014 - 9:52am

I know we haven't posted in a long time.  Mostly, to be honest, because it feels exhausting to sit down and type about what's going on after all this time.  All in all things haven't been too bad.  All the usual things are happening with Hailey (some good and some bad), but unfortunately her MRIs have not been great over the last several months, ending with yesterday's results.  The quick summary is she has been on Affinitor since February taken by pill from home each day (which has been nice) with regular trips to Madison for port flushing and bloodwork (we kept her port in for now just in case).  She no longer has a feeding tube.  The MRIs show that the tumor has been slowly growing over the last year and is now 20% bigger than a year ago. So we are back to analyzing and making the difficult decision whether to stay with the treatment she's on and give it more time, or switch to something else again.  Not sure what we are going to do yet.  Gathering lots of feedback.  Been here before.  It's always scary because while she is doing well from a symptoms standpoint at this time, we never know when the tumor will start pushing on something that can cause major problems.  That's where we're at.  Back to square one again in many ways.  We'll see what comes next...