Dear Family & Friends,

We’ve had quite a month.

Barry was being treated with Rituximab and Dexamethasone for his ITP (Idiopathic Thrombocytopenic Purpura), low platelets.  He was miserable (fatigued, dizzy, headaches, sleeplessness, etc.) from these treatments, and they were not effective.  He had two serious  bleeding episodes, one that sent him to the ER in Palm Springs in the middle of the night with an uncontrollable nose bleed, and another that brought us to Stanford with spontaneous bleeding from the gums.  Not only have his platelets not responded, but now his entire immune system has gone haywire.  He has high white blood count, high liver enzymes, low platelets and high clotting factors.  Last week, David Miklos said these were “weird labs.”

David’s best guess, based on lab results and his brilliant mind, is that Barry is losing the graft.  He described what is going on in Barry’s immune system as a Civil War between the graft and the host.  It’s Gettysburg, three years in.  Julia doesn’t like this analogy as it makes Barry the South.  But we know who ultimately won.

Barry has a multitude of Large Granular Lymphocytes (LGL) T Cells that are wreaking havoc and a lot of rogue antibodies that are attacking his immune system.  Still no cancer which is good news.  But Barry is sick and needs to be treated.  Hence Plan B.

David has conferred with his mentor at Harvard, where he trained, who is a big macher at the American Society for Blood and Marrow Transplantation, and Barry was the subject of part of the Stanford BMT Retreat today.  We’re being treated by the best and the brightest and that gives us much comfort.

This is also very unusual.  According to David there’s no data, no literature, no studies, nada.  They’ve “never seen this before.”

Barry will go into the hospital tomorrow for three or four days of treatment with ATG, a monoclonal antibody that will kill the nasty T Cells.   He was treated with this prior to his transplant three years ago.  It’s nasty stuff but will hopefully do the job.  They will be monitoring his counts to make sure the treatment is effective.  He will come home for about a week to let the nasties die and then he will be infused with his donor’s frozen cells in a boost as well as a DLI (Donor Lymphocyte Infusion).  He will also be on an immuno-suppresant (cyclosporine) and he’s been on acyclovir to prevent a recurrence of the zoster (shingles) that almost killed him in 2006.  He will be immuno-suppressed but will not have to be in isolation.  He will just have to be careful.

We’re glad to have a plan.  We’re not glad to have to have a plan.  It’s been, to say the least, emotionally draining (hell) on both of us and we’re back in cancerland, even though there’s no cancer.  This is our life.

All of your cards, emails, phone calls, etc. give us great comfort.

Much love to all,

Bonnie

If anyone wants to be removed from this list, please let me know.  Also, for those of you who are new, my email journal and Barry’s transplant stories are at http://www.agauchepress.com/