Dear Family & Friends,

Many of you have contacted me to ask how we are doing.  It’s a very long, and sometimes tedious, story.  I will attempt to make it clear and real.

What we know:

• Barry has a T-Cell Leukemia, but it is not T-PLL (T-Cell Prolymphocytic Leukemia) as I reported in January.  That is because the T-Cells are not typical prolymphocytes.  What this all means we do not know, and do not need to know, as the treatment is the same. Dr. Steven Coutre, Barry’s original Stanford hematologist and Director of the Hematology Clinic, describes this diagnosis as “definitely weird.  He will be Barry’s treating physician until we move back to David Miklos for transplant.

• We do know that he had T-Cell problems all along, and he had a “messy diagnosis” (David Miklos) from day one.  This is not a transformation of his B-Cell Leukemia or a result of his transplant, but another animal altogether.  This cancer basically exploded as Barry lost his first graft.

• Barry is in his fourth week of Campath, a monoclonal antibody that brought him into remission in 2006 in preparation for his first transplant.  We go to Stanford three times a week for a subcutaneous shot in his abdomen.  He had many symptoms in the beginning of this treatment (fevers, chills, dizziness, etc.) but they have subsided.  His counts (white blood, hematocrit, neutrophils, lymphocytes, platelets, etc.) are looking very good.  It looks like the Campath is killing off the really bad T-Cells and antibodies that were attacking his platelets and we are hopeful that this treatment will bring him to remission again.

• We have had two Emergency Room visits. Read the rest of this entry »