Follow Blog Posts by Email: (Field available on laptops/desktops but not on mobile devices)

Friday, September 19, 2014

Roller Coaster of Emotions

I felt like I was on a roller coaster of emotions today - from feeling angry and down to feeling thankful and hopeful. There were times today when I felt sick of dealing with all of this - sick of missing my kids - sick of sitting in hospitals - sick of researching trials - sick of it all.  I was missing carefree days and was feeling cheated by life.   But by the end of the day, after meeting with all the doctors and arriving back at 8pm, in my cozy, clean house (It was cleaning day!) and relaxing with a glass of wine, I felt hopeful.

Here is the plan going forward.  Of course, there may be some bumps in the road and we may have to change the plan at some point but as of today, this is the plan:

1.  Scott is having surgery on Monday the 22nd to insert a shunt to drain the cerebral fluid back into his body instead of trying to bulge out the incision.  This is just one night in the hospital.  The surgeon will also look closely at the incision while Scott is under anesthesia and do any necessary fixing there.  He will also drain fluid to check one last time for infection but this week's culture was clear so hopefully it stays that way.  :) 

2.  Scott is enrolled in a trial to start on Monday the 29th with a drug called AG-120 targeting a protein mutation that his tumor has called IDH1.  This is called a "targeted" therapy as opposed to a chemotherapy or immuno-therapy.  It is a pill that he will take every day at home.  The theory is that it will "HEAL" his cells back into normal cells instead of destroying the cells.  Pretty interesting stuff and we are HOPEFUL!

That's it for now.  The surgery on Monday isn't until mid-late afternoon but I'll blog an update at some point but it won't be till later in the day.  



  1. Sending love and support your way. I am HOPEFUL about the trial. It sounds interesting. Thank God for the smart folks out there who figure this stuff out. All in! Love you guys.

  2. Thinking of you and your family, stay strong.