Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary:

Robert’s Bone Marrow Transplant + almost eight months

Recently, I have felt like we were heading into the station and about to exit the roller coaster (I have never been very fond of roller coasters). Just as we entered the station the conductor decided to let us go around again and see if we could be frightened more the second time around.

Robert’s doctors’ had been tapering his immuno-suppressant drug, cyclosporine, from September through January and he was finally removed from it at the end of January. Dr. Cowan felt I worried too much about his counts and that if I only saw them once a month it might be better. On February 6th, an engraftment study was run with blood. This is a research and development test that the results are often in question because it is still so experimental. When I called two weeks after the blood was taken, Dr. Cowan did not want to share the results because he questioned the administering of the test. He asked me to bring Robert in to run the engraftment study again. I took Robert in on February 25th and recommended we also check his blood counts. The next afternoon, I requested the counts be faxed to me. I received a quick call back because Robert’s counts had dropped to 1.6 for white blood count and 30K for platelets (last time his platelets were checked he was at 109K). It was decided Robert should have a biopsy the next Tuesday.

Friday, March 1st, Dr. Cowan left a message on my cell phone to call and I knew that was not a good sign. When I returned his call, it was not good news. Dr. Cowan said that the blood engraftment study showed Robert was down to only 30% percent donor cells and the rest were his. He did then tell me that the data from the last blood engraftment study (the one he did not believe) had been 50% donor. Dr. Cowan was pretty sure Robert was losing his engraftment but wanted to wait to receive the results of the biopsy and discuss it with his team before he made any decisions. I asked if he thought he took Robert off the cyclosporine too soon but he didn’t think so. Dr. Cowan said they had always been concerned that they may not have given Robert enough of his donor’s marrow. He was also concerned that maybe the marrow did not have a dense enough stem cell mix and that maybe Robert needed more.

Robert and I again went to UCSF on Wed. for his monthly treatment and clinic visit. I suggested we take blood for an enzyme test to see if he is still receiving the enzyme he needs. He is talking up a storm and his favorite phrase right now is, “You know what?”

Dr. Cowan finally received all the data in about 6:30 p.m. Friday night and called Mark with his plans. The plans are to do another bone marrow transplant with the same donor. Here is the part that needs your help; please pray that Robert’s donor will be willing to give bone marrow again. Dr. Cowan would like to use the same donor but will fresh marrow. If he can’t get new marrow, he will use the old marrow left from July. Robert would go in two days before the transplant and start a different course of chemo with a transfusion of his donor’s marrow two days later. He will loose his hair again. And even though it is the same donor and he did not suffer from graft vs. host or host vs. graft, it could occur this time.

Friday night Robert started back on cyclosporine at full dose, every eight hours. Probably the transplant is a month away, which gives each of us plenty of time to pray.