Dear Family & Friends,

Since I last wrote to you, about 10 days ago, many things have happened, some good, some not so good.  (I know this may be too much information, but it helps me to write it down.)

On the good side:

Barry responded to the steroids.  We had been told there was a 50/50 chance of response, so this is very good news. Barry’s donor is completely on board for donating stem cells again for his “boost.” It is scheduled for January 21.  This woman is a saint.  It is not insignificant for her to do this but she is not hesitating one bit.  She and Barry had not been in touch since last summer, but she friended him on Facebook when she was notified about the need for a new donation.

We have full confidence in the team at Stanford.  Every time we go in (which has been very frequent lately) nurses and other doctors praise David Miklos unconditionally.  This is a huge relief.  He’s a really smart and caring man.

On the not so good side:

Barry ended up in the hospital last Monday night with RSV (Respiratory Syncytial Virus).  He was only in overnight (big relief) and is now finished with his course of heavy-duty anti-viral meds (Ribavirin) which made him high, but not the good kind of high.  Because the CT he got Monday night, actually early Tuesday morning, was clear, he was sent home with oral meds and did not have to have Ribavirin administered as an aerosole while he was tented, which does not sound like fun at all.
The platelets continue to drop when Barry is not in treatment.

So now the plan is as follows:

Barry’s back on steroids through tomorrow.  And he’s responding. We went to Stanford today and if they were low (they were 16,000 on Friday) he was to have an infusion of platelets.  They were at 38,000 today.
Tuesday he starts on a four week course of Rituximab, a monoclonol antibody.  He is manufacturing platelets but they are getting zapped by antibodies.  His infectious disease doc, Wes Brown (more about her later) describes this as teenagers gone wild.
January 21 he will get a “boost” of his donor’s cells, but they will have fewer T-cells than the original transplant for reasons that only David Miklos can explain.  But we trust him.
If the boost does not work, they can still give Barry DLI (Donor Lymphocyte Infusion) which is more of the cells that they saved from the original transplant.

David has told us that they will never know the reason for his ITP (Idiopathic Thrombocytopenic Purpura).  It is an autoimmune disease and could have been from a virus, or could be from his mixed chimerism.  About 5% of post -transplant patients get this. He does have another patient with a similar mixed chimerism, who had this treatment (but DLI because his cancer reccurred) and he is doing great.

This is cutting edge stuff and we have a pretty good feeling about it.  We have options and the docs are totally on top of it.

In the midst of this, our insurance company denied authorization for the Ribavirin pills when Barry was released from the hospital.  So we had to go to Stanford on Wednesday, and I had to take 3 hours of sick time, because they would have rather him stay in the hospital than cover the measly amount (~$200).  They finally authorized it on Thursday and we have been reimbursed.  Today, when we saw the amazing Wes Brown (infectious disease doc with the BMT program who saved Barry’s life when he had disseminated zoster 3 years ago), she and I commiserated about our fights with Blue Shield on Wednesday.  At one point I had someone tell me that since Barry had not authorized me to talk to them they couldn’t tell me anything.  I had a major meltdown, not helped by the understanding that we are among the lucky ones who have “good” health insurance while the US Senate dithers away.

So bottom line, we’re back in it.  We had started to live a “normal” life, not without some trepidation, but making nice plans.  We are still able to go to Palm Springs with our family, including our adorable granddaughter, Mimi (http://mimiendelman.blogspot.com/) over the holidays, but we have canceled a trip to Africa in March.  Too risky says David Miklos, and we agree.

I have also re-assumed my role as family cheerleader.  When Barry gets down, which, for those of you who know him well, is not infrequent, it is up to me, no matter how I feel, to relate the facts and try and make him feel better.  I never lie to him, but I do sometimes have to pretend to hope that is difficult to muster.

As always, we appreciate your notes, emails, calls, etc.

Please forgive the length of this email and the confusing medical details.  It’s my reaction to  my re-activated PTSD.

Barry’s email if you want to contact him is bsw@agauchepress.com.

Wishing everyone a healthy and happy holiday season.  Let’s hope 2010 is a banner year.

Love,

Bonnie