The road to Little Rock

Our first visit to Little Rock was October 11, 2005. It was an overwhelming array of tests over a five day period, including bone marrow biopsy, gene array, MRI, PET scan, 24 hr urine, echocardiogram, pulmonary function test, skeletal X-rays, bone scan, bone density, EKG and more blood tests than you could imagine! Tuesday the following week, we met with our assigned physician, who reviewed the results and discussed the major research study we qualified for. Don's tumor growth had been aggressive and we were both a bit alarmed. About 30 minutes later, Dr. VanRhee came in to talk with us about the vaccine study he was doing. Don was the perfect (bad) genetic type for this study. The protocol offered the same benefits of chemotherapy and tandem autologous stem cell transplants, but added regular injections of a peptide vaccine that would be created from Don's white cells. The assumption is that the combination of vaccine and stem cell transplant would help to reboot Don's natural immunity to the myeloma cells.

We carefully considered the decision to participate in this study. All of the treatment would need to be done on an outpatient basis in Little Rock. We would be away from home for at least a month three different times during the year. I would be unable to continue to work. And, of course, there were the usual concerns over the logistics of such an undertaking. Both of us worked for medical groups without benefit of paid time off. Don's disability plan wouldn't begin until at least 90 days after needing long term care, etc. The study was sound and Dr. Van Rhee's credibility as a clinician and researcher was unquestionable. When Don asked him when he needed to start, Dr Van Rhee asked him what he was doing the next day. Don replied that he was scheduled to work. Dr. Van Rhee looked at him and said "This is serious sh#!! man!" We immediately knew that this would be someone we could work with.

The next step was to get insurance approval (again!). There were several glitches in communication with the institute, but eventually we arranged to start November 14th, or so we thought. The institute was moving to a new clinical office the weekend before we were to come and our schedule wasn't confirmed. We went to Little Rock and tried to get information, only to discover that all of the tests done in October needed to be repeated before he began the protocol.