The trip was definately worth it. Aside from being the pioneer in BMTs, The Hutch is leading in cancer research and have more options available to us then Hopkins. The main thing is that the Hutch can do a BMT from an anonymous donor if they are NOT a perfect match. They still need to be close but can have a class I antigen mismatch. Given that, and the BMT report that they pulled regarding the four possibilities, one of the German donors is looking pretty good--not definate. The Hutch does not want to do a transplant from my parents unless last resort. An anonymous mismatch is better than a haploid (parental) match. The Hutch even said they view a perfect anonymous match equal to a perfect sibling match. Indicative of how well they have the Graft Versus Host Disease (GVHD) under control. The Hutch is a big proponent of Graft Versus Leukemic effect. This is where the donor t cells attack my leukemic cells (part of GVHD). The Hutch does not do T-cell depletion (reduce the number of t-cells in the marrow harvest before given them to me) where Hopkins does. This is an area of investigation for me.
The facilities out there were amazing. The people were nice and knowledgable. We toured the Univ. of Washington hospital. The Cancer Alliance has two floors where BMT patients stay. The Hutch does over 400 BMTs per year and actually pioneered the procedures. One of the founding doctors (Dr. Hanson) was doing rounds when we were there. Also, Dr. Hickman, of Hickman Catheter fame (tube I have in my chest), works there and puts all the Hickman's in. Pretty cool. The main Dr. there received the Nobel Prize for his clinical work in BMTs.
So, the main decision point is when the results of the anonymous typing comes back. If we have a perfect match then I am leaning to Hopkins given the proximity and degree of risk. If it is anything else, I am heading to Seattle. Average stay for a BMT in Seattle is 4 months. 1 month in the hospital, the rest daily out patient visits. Have not planned out the logistics yet. We will cross that bridge when we get some intel.
In the meantime, I am going to tour Hopkins BMT floors and since Univeristy is so close, check out their BMT program.
Gary and Marcy,
I don't know what I am commenting on but I've read several posts and I'm so glad Megan told me about your journal. Your attitude is so wonderful. You both have such a great sense of humor on a regular day, but I think now you're ready for Letterman.
I do pray for you both each night as I fall off to sleep. I pray for Patrick and Libby too. I will keep reading on about what is to come. You sound so realistic and optomistic about everything, so I too will be positive.
I hope you enjoyed your trip to Disney Land. What a fabulous way to spend the time waiting for news. For Matt and me I think it would be a trip to Chille to ski on the mountain tops (or at least to see them.) We would need snow to cheer us up.
Love to you both. I'd say hang in there, but you obviously are!!