Website update January 18, 2008

What a week!  Almost there but not quite.

Yesterday, Bob rallied and spent all day at a board meeting of Ceres, the wonderful organization he had headed up until his illness made him step down five years ago. He continues to be a member of the board and yesterday summoned the energy to participate for much of the day. Of course he came home exhausted. After a simple dinner with me, Katie, (now 9 years old) and Sam (who is home from Yale for a semester), Bob was getting ready to go straight to bed, when the phone rang. Katie called me – “Mom it’s someone from Mass General”. What we thought would be an automated appointment reminder turned out to be “the call”. They said they had an offer (i.e. a liver) that would work for Bob and we should get to the hospital immediately.

We have already had some experience with this kind of thing. Bob was the “back-up” for several transplants in October. One of those calls had come the evening of the last Ceres Board dinner. Bob had gone through the whole dinner without touching a bite in case he was called in for surgery. A week after that, he was called in to the hospital, only to get sent home again.

This time, though, everyone sounded very optimistic. It was an unusual scenario – the liver was destined for a small child and the surgeon for that operation expected to use only a quarter of the organ, leaving three fourths for another patient.  This was a way to get Bob a good healthy liver without having him be at the top of the list with a high MELD score.

It seemed like everything was lined up perfectly.  Sam was home and could take care of Katie and field calls from family and friends. I am on winter break at RISD and don’t have classes. Last Sunday, our friend Steve Clark had just given Bob a cd of music from services at our church. While we ran around grabbing the bag we have had packed since October, and throwing in books Katie collected for me to read, Sam loaded the music onto his Ipod so that Bob could go into the OR listening to familiar hymns.  We dared to hope that the stars were aligning for us.

It only takes us a few minutes to drive to the hospital and Bob was calling his family on the way. After a short wait we met the chief surgeon and head of the transplant program who would be doing the surgery. He was clearly excited and ready to go. He spoke with us for a half hour outlining the issues and the procedure and explaining that the liver was being divided in New Haven and then the section would be flown directly to MGH. As soon as he heard that it was all OK, he would send Bob to the OR to be sedated.  By then it was almost 9pm. The doctor expected to send him to surgery about 10. Minutes later the call came and we learned that the sectioning had required the surgeon to take the entire left half of the liver and the remainder was too small for Bob.

So we went home again.  The whole adventure had taken less than three hours.  It was very surreal and quite disappointing.  Another dry run. We are going to be very experienced with how this works by the time it really comes to pass.  It was great to know that Sam was here, that Katie would be cared for, our friends were available to come wait with me all night and our families were ready to be on call from afar and to come help as soon as needed.  It would be great to get this done at Mass General, but Bob is also listed in Cleveland. Should a call come from Cleveland that would be more complicated, but we went out there in December for a check up and met many wonderful people who have offered us support and even a place for me to stay.  So we continue to wait and to appreciate how ready everyone is to support us.

We also want to thank everyone who has participated in the Massie Family Trust. We are tremendously grateful to you all.