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: Read the rest of this entry »

Dear Family & Friends,

As some of you know, Barry’s platelets have been dropping.  We found this out as a result of his three year post-transplant regular blood work in November.  Since then, he has had a PET-CT scan and a Bone Marrow Biopsy which ruled out a reoccurrence of his cancer (CLL).  That’s the good news.

The platelets have now dropped to 22,000.  Normal is 140,000 – 400,000.  Doctor Miklos does not think that this is ITP (Idiopathic Thrombocytopenic Purpura) and rather is a result of Barry losing his graft.

Barry has started on heavy duty steroids (Dexamethasone, 40 mg per day for 4 days) today, and may do two courses, but David is not optimistic about this treatment. (We are also grieving that Barry will not longer be able to compete in the Olympics.)

He is planning on giving Barry an infusion in January of his donor’s cells.  This is not the Donor Lymphocyte Infusion (DLI) that he told us about earlier, but a different kind of infusion that he has to get from the donor.  She will have to go through some light chemo and apheresis again.  We hope that she is willing and able to do that.  It will take time, hence January.  It will just be a normal, if you can call anything about this normal, infusion — no hideous prep like for the transplant.  (If for some reason her cells are not available Barry will get the DLI with the cells from the original transplant which they save.  Don’t ask me what the difference is.)

This is all terribly confusing and distressing.  David just got back from the ASH (American Society of Hematology) conference in New Orleans where he consulted with many of his colleagues about Barry’s unusual situation.  We all knew Barry was a unique individual, but who needs him to have a unique (and terrifying) condition?  And we thought that we were approaching the exit from the damned woods.

Tonight we go to our wonderful Book Group where we are reading the cheery, but amazing, “Slaughterhouse Five.”

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

I will keep you posted as we know more.

Love,

Bonnie