Hi Friends,

Today is DUE day for Clay & Rebecca's new baby in Mexico City.  We are excitedly awaiting news - remembering how fraught the days and hours are waiting for an arrival.  We look forward to sharing their news soon.  

Joel and Andy are returning now from a long day in Morgantown today.   Thanks to Andy, I was able to hunker down at Rolling Ridge to work these past two days while he and his dad conducted the ritual of three and half hours drive to and from WVU for a planned immunotherapy infusion and MRI.

I'm sad to report that Joel is now "post-trial" for darratumumab immunotherapy clinical study.  We learned that today's MRI has revealed a new tumor, small but naughty, in a new place, near the hippocampus.   With a recurrence of glioblastoma multiforme (GBM), Joel's no longer eligible to continue with the monthly immunotherapy infusions. Our beloved oncology team - Dr. Aulakh and Nina - reminded us that recurrence of this disease typically happens 4-6 months post surgery.  For Joel, it was 12 months, nearly to the day.   This is a good sign that the darratumumab treatments are having a beneficial effect.  The parameters of the study, something every investigator must negotiate with their funders, does not include patients that have a recurrence, e.g. Joel's newly sprouted tumor.

Sigh. We are considering a few different paths that we will explore more closely once we've had a chance to breath together again.  One option: Begin a new medicine regimen at WVU (Avastin, biweekly infusions with an every 6 week chemo of Lovustine thrown in) with gamma knife surgery in the very near future to target and hopefully stall little ms. small and naughty, the newly sprouted tumor.  Another option: find a different clinical trial that - as many of you have shared - is showing promise around vaccines, ultrasounds, other infusions. OR - perhaps something else we haven't yet had a chance to discuss.

We shared this news with our family with a reminder to ourselves and them of what an amazing year of friendships and family, love, babies, visits, vacations, hikes on the mountain, and all the good things it has held for us.  We begin year 2 with the same promise and hope for enjoying our one, wild precious life.  (Thank you Mary Oliver).  

The cranes?  A gift from Dee Ann  handed to us by her brother Lance earlier this month.  1000 cranes soulfully folded by Dee Ann.   A reminder of love, family, hope, healing.  For Peace on Earth.