Dear Family & Friends,

As some of you know, we have been on pins and needles (or worse) for the last month or so since we found out that recent results indicate that Barry is losing his graft. He is experiencing “mixed chimerism” which means that both his blood and his marrow are partially donor (anonymous 20 year-old woman, his inner trophy wife) and partially recipient (Barry). And the percentage is going down, not a good trend.

The good news is that there is no evidence of cancer (CLL) and Barry is feeling good and looking well.

I will spare you the complex cellular analysis that Dr. Miklos explains to us in emails and in person, and which is extremely difficult to understand, but here is the strategy we decided on together as of yesterday’s visit to Stanford.

• • We have agreed that Barry will not receive DLI (Donor Lymphocyte Infusion – essentially a booster shot of the donor’s stem cells) unless there is one of two indicators, which are not yet occurring.
    1. Evidence of disease progression
    2. T-Cell collapse (Barry’s T-cells, which fight cancer, have been holding steady at well over 80%)
  • The major reason not to give DLI precipitously is that it can cause serious GVHD (graft vs. host disease) and that is not at all desirable.
  • Barry will have his chimerism tested once a month, so that if there is precipitous drop in the percentages we will re-assess. He will also have a PET-CT scan in about a month, or whenever David can convince Blue Shield to cover it, to verify that there is no Richter’s transformation, a common complication after a transplant, where cancer mutates.

Dr. Miklos has been extremely open with us and has told us just how much they don’t know. In fact, at Mass General, which has the most similar BMT program to Stanford’s, they believe that mixed chimerism is a good thing. Go figure.

The bottom line is that today there is no cancer and that is excellent.

As of today, Barry is off of more drugs and also allowed to travel, so we will be going to Maui November 11 – 16, a trip we postponed twice because of treatment regimens.

Many of you have asked how we are doing and hoping to hear that everything is just fine and Barry’s health is not at risk. That day may come, but it is years away.

We’ve had a lot of ups and downs over the last couple of years, but today we are doing very well. We are enjoying our life, making limited plans for the future, and celebrating the present. We are also celebrating the 40th anniversary of our first date tomorrow, November 4. That night we went to see “Battle of Algiers” and H. Rap Brown was there. What a long time ago that was. But we’re still here and kicking and we still believe in peace and justice. And there’s another horrific war to stop.

As always, please check out Barry’s (re-designed but still needing work) website, www.agauchepress.com to see the latest.

My love to you all,

Bonnie