Update as of 3/25/13

Today we reached another important milestone on the path back to “life as usual.” We moved Bob’s office out of the dining room on the main floor of our house and back to what we affectionately call the “World Headquarters” in the basement. This has involved some significant technology challenges, with dismantling and reassembling computers, monitors, a printer, and a fax machine, untangling phone lines, and sorting through piles of accumulated papers, pens, etc. It has been a big job, and we are not finished yet, but Bob has managed to figure it all out. It may take him longer than it once would have, and he sometimes makes mistakes that can take a long time to untangle. But I am impressed at how well he is doing at recovering his former capabilities, even for these complex tasks.

This move is an act of faith that the regimen we’ve now settled on of a burst of IV steroids every six weeks will be enough to keep Bob safe from seizures over the next five months. One of the puzzles of navigating Bob’s healing journey has been to know how much immune suppression to do and for how long. We’ve tried to negotiate an intermediate path, less severe than the four to six months of Cytoxan suggested by some experts. What the recent seizures have let us know is that we need a bit more than we’ve done and for a bit longer. So we’ve mapped out a plan to take us to the one year anniversary of the start of this adventure.

At the end of last week we were back in Charlottesville where I was attending a Women in Educational Leadership in Virginia conference. We joked that we’d made Bob an honorary woman because he now is so easily moved to tears. While there, we went to visit two of the doctors who cared for Bob this fall, as well as many of the nurses and therapists who worked with him. Both doctors were incredibly generous with their time, each spending over an hour with us. Everyone was so pleased to see the tremendous progress that Bob has made, despite his continuing challenges with memory. We will be forever grateful for all of the people who participated in bringing Bob back to life.

Life has assumed a close enough approximation to life before that even if it were to plateau at this point we could manage and be very happy. But with Bob’s boundless curiosity and drive, we are hopeful that his progress will continue.

Thank you for being among the cloud of witnesses who have held Bob and me in your hearts throughout this healing journey.   

-Megan