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. One was minor but the other required our first ever trip in an ambulance from the Clinic Waiting Room at the Cancer Center to the ER as Barry was having extreme shortness of breath.  We thought he was dying.  After heart attack and pulmonary embolism were ruled out, about 27 hours later, we went home.  We found out the next day that Barry has CMV (Cytomegalovirus), a common viral infection that goes along with Campath.  It was probably not the cause of the ER visit but we felt it contributed.

• We are now going to Stanford EVERY DAY for an infusion of Gancyclovir, a powerful anti-viral.  Barry has a PICC line in his arm, so at least he doesn’t have to get stuck anymore.  This is an exhausting regimen and we are hoping it will end soon.  We are completely burned out.

What we do not know:

• Timing.  We do not know when the second transplant will occur, or if it might even be two transplants, one Autologous (from his own stem cells to further clear out the marrow) followed by an Allogeneic (from his angel donor’s stem cells).  David Miklos had said he wanted to do it fairly quickly, but Steven Coutre has said that Barry will be on Campath for at least 6 weeks and maybe up to 12 (the normal course).  They will have to do a bone marrow biopsy — it will be Barry’s 12th biopsy — to determine the state of the cancer.

Wes Brown, the amazing infectious disease doc associated with the BMT/Hematology program at Stanford, is our new best friend.  She knows Barry very well as she saved his life when he had the disseminated shingles in his blood in 2006.  She always remarks on his reserves and that he tolerates treatment and responds to it well.

In terms of our emotional state it’s up and down.  We are definitely hopeful that Barry will make it to a second transplant and have some more good years ahead.  The thought of going through the whole shebang once again is enormously daunting, but we are   prepared to do it.  What other choice is there?

Many of you have called or emailed offering support.  The only concrete support we need now is food.  I am completely unable to cook after spending half a day at Stanford and trying to work some.  Our freezer is now full of delicious soups and main courses and I want to thank everyone who has contributed and will be doing so regularly.  I especially want to thank Linda and Perry, Eileen and Bob, Susan, Judy, Diane and Ross, Ann and Dan, Cheri and David, Ellen and Steve, the Wet Birds and the Or Shalom Chesed Committee.

I also want to acknowledge the incredible support and care I am receiving from SGH, my employer, and Bert, my supervisor.  At least I don’t have to worry about that.

I have found it difficult to write or talk on the phone most days and that is why you haven’t heard from me and why I rarely return phone calls or emails.  Please understand that I am barely able to function some days.  We are working to set up a (private) Web site for future communications so that I can update everyone more regularly.  You will also be able to leave comments there.

We’re on our way to Stanford now for a longer infusion (four hours) of IVIG (Intravenous immune globulin).  Since insurance takes 3 – 5 working days to approve this, we signed a waiver yesterday for $46,019.36!  One might ask about the 36 cents, but oh well.

Love to all,

Bonnie