You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130

Thursday, June 17, 2004, 6:00 pm Scottsdale Time

Well, more waiting. We just returned from our debriefing consult with Dr. Benn E. Smith. He has not yet reached any conclusions and won’t until all the test results are in. In fact, he wants me to have two more tests tomorrow, which means we will be extending our stay here into the evening. In our meeting when I pressed Smith for possibilities, his response was that it is as if there are 20 different pieces of cake in front of us with no point in selecting THE ONE until the recipe is in place. Some of the ‘cakes’ are treatable; some are not. When all the results and evaluations and interpretations are complete, Dr. Smith will mail copies of the Mayo report to both Dr. Dooley and to me in 10-14 days.

Smith did tell me there is no improvement in the nerves in my legs, something that was a great disappointment to hear. About my disease, he was neither encouraging nor discouraging. He would not venture any guesses as to a definitive diagnosis or prognosis at this point.

Earlier in the day I had blood drawn and a spinal tap, both of which were no big deal. Smith said the spinal fluid looked good, improved over the condition in February.

From our 4:00 pm meeting with Smith, we went to the insurance desk because these additional tests must be approved by Blue Choice, my insurance carrier. Of course, Blue Choice personnel had gone for the day, so tomorrow Rose and I will go the Clinic very early to get the necessary approvals rolling.

We have changed our flight from 10:10 am to 6:30 pm tomorrow and have arranged for a late checkout time here at the Embassy Suites.

Overall, I am very disappointed, but shouldn’t really be surprised. These past months have been ones of a lot of waiting for answers.

A brighter note to the day: We had lunch at a restaurant overlooking a beautiful golf course.

We will leave our room shortly to meet Den for dinner, another respite from all this fretting and waiting.