An Update as of 6/25/13

Life has been full and rich with family time since we left the Mayo Clinic on June 14. We were home only three days, busy catching up with things that needed attending to and repacking our suitcases. We then headed to Columbus, OH, where we presented a workshop at the Ohio Connect for Success conference on Wednesday afternoon, and then enjoyed family time on Thursday and Friday before heading to the Chautauqua Institution, where we are vacationing with a extended family group of 17, including our 11-month-old grandson Everest, and our 5-month-old great niece Cora.

In our final wrap up with our two neurologists at Mayo, the decision was made to stay with the plan of 12 weeks of aggressive immune suppression to “test the concept” that Bob’s current difficulties are the result of an ongoing immune response or whether they are instead being caused by the scar tissue that is in his brain. When we return to Mayo at the end of these 12 weeks, Bob will retake the memory assessment he had on this visit. If there is substantial improvement (at least 30%), then we will conclude that the immune suppression is having a positive effect. If there is no real improvement, then the conclusion will be that the damage has been done and that we will instead turn to achieving better seizure control and developing compensation strategies for Bob’s current deficits. So we have a lot riding on the next 12 weeks. Our neurologist is skeptical that this trial will be successful, and has estimated that we have only about a 20% chance that the deficits are reversible, but we are steadfastly holding onto the hope that things can improve.  

Although there are certainly moments of discouragement, there are also beautiful moments that renew our spirits. We had one such moment while we were home. After Bob had worked hard for several hours mowing the lawn and cleaning out the beds, he called me to join him on the dock. He was tired so we laid down on our backs and gazed at the sky. Although it was a cloudy day, there was no rain in sight. And yet, as we looked up in astonishment, a rainbow appeared sideways as if part of a halo over the earth.

This was especially significant because we chose the rainbow as the theme for the wedding 37 years ago, proclaiming that it was “a sign of the covenant.” We looked at one another and said “everything is going to be all right.”