Dear Family & Friends,
Today marks exactly one year from Barry’s diagnosis, during a routine physical, of CLL (Chronic Lymphocytic Leukemia).
Ten days ago we met with the Bone Marrow Transplant doctor at Stanford, Dr. Miklos (http://med.stanford.edu/profiles/cancer/faculty/David_Miklos/) who recommended a transplant as early as mid-September. After spending time recovering from this shock, and exploring his reasons, which made sense, we met with Dr. Coutre .(http://med.stanford.edu/profiles/cancer/faculty/Steven_Coutre), Barry’s regular hematologist yesterday. While we thought (hoped) that Campath, the treatment Barry has been receiving for the last twelve weeks, could possibly be a cure, we have learned that the only potential cure is the transplant. Because of Barry’s clonal population of T-Cells, as well as his chromosomal abnormalities, he has an aggressive form of CLL that will definitely re-occur and likely lead to death.
Both of these doctors are CLL specialists and top-notch research docs. We feel like we are in good hands.
We have not scheduled the transplant, but it will most likely occur sometime between November and March. While this is not emergency surgery, we have been told that Barry will have a better outcome the sooner he does it. We do not yet know whether the Campath has cleared Barry’s bone marrow. That biopsy will not happen until late August, a month after treatment ends. We have started the ball rolling on identifying a donor through the National Marrow Donor Program (http://www.marrow.org/). This could take some time, and if a donor is not found, we will conduct a drive among family and friends (that would be all of you).
The transplant itself is done mostly outpatient, and we will move to Palo Alto for four months. The entire process, including recovery, will take about a year.
We just spent a wonderful weekend in Carmel, and will be going to the Feathered Pipe Ranch in Montana for our yoga retreat August 5 – 12. We plan on a couple of more vacations and trips before the transplant.
Barry is doing very well emotionally, and is feeling very hopeful. He has become the zen master of life.
Lots of love,
Bonnie
