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Monday, December 29, 2014

How is it Now?

How is it now?  This is the question that my big sis, Deb, has taught me to ask myself throughout each day.  It helps to ground me in the moment and not to focus on what might or might not happen.  Typically, "now" is pretty ok.  Sometimes "now" is even great.  And sometimes "now" is not so great and that's ok too.

We had a "not so great" moment last Monday, the 22nd, when we got Scott's December scan results before Christmas.  They weren't good and the trial drug wasn't working anymore.  Time to change courses again.  Our fabulous neuro-oncologist was ready with some options but unfortunately the option that we wanted to explore was not available to Scott at MSK.  We were referred to a team at New York Presbyterian (Columbia).    After spending a week pondering options and talking to new doctors, we are thrilled to report that Scott was approved today by the FDA to try an immuno-therapy drug off-label (it is FDA approved but not for brain cancer)  called Keytruda.  The theory with this drug is that it allows his body to "see" the tumors as intruders and his own immune system will fight them off.   We are also exploring the option for him to get a second round of radiation and he is going for prep work for that this week.  He starts the immuno-therapy drug on Monday the 5th.

By learning to live in the NOW, we were able to enjoy the Christmas holiday with friends and family.  We hope you all had a wonderful holiday too!  Please keep Scott in your prayers.  We pray that his body stays strong for the new treatments, that the radiation and new therapy work to fight the cancer, and for the focus to live in the Now!



  1. It was so great to spend time with you during the holidays and enjoy a few of those great moments! Love is all there is. <3

  2. Scott, you, paige and JJ are always in our prayers and thoughts!! we love you guys and will continue to pray. You guys have to be the strongest family I know!! Continue to stay strong and positive!! and being strong is also asking for help!! we are always here for you. please let us know if there is anything we can do for you! love and prayers. the kilbrides

  3. Julie, here is the full talk by Thanissara, the buddhist teacher who taught me "How is it now?" as a remedy to suffering. Warning: you need to have some quiet time where you can really reflect on her words. <3 Sending you unending love and wisdom.