Dear Family & Friends (all 193 of you),

Barry just completed his 8 week course of Campath and we have a bit of a reprieve.  He will have a bone marrow biopsy (his 12th) on April 12 with results (the verdict) on April 19.  If he is in complete remission, he will get a transplant, but we do not have any further information on when that would be.  Our best guess is sometime in May.  If he is in partial remission, he will have further treatment with another drug, Nelarabine, and we do not know how long that course of treatment would last.  We, of course, are hoping for complete remission.  All indications are good, but they can’t really tell from his regular (peripheral) blood draws — they have to look at the marrow to have a definitive answer.

He’s feeling pretty good now, but has been battling infections.  We had another ER visit last week that was really no fun at all.  He had a fever and we spent 21 hours at the Emergency Department and got 3 hours of sleep.  He had been diagnosed with yet another viral infection, MPV (metapneumovirus), which they were not treating because they did not feel like it was dangerous unless he got a fever or shortness of breath.  Since he got the fever, he just finished a course of Ribavirin, and he’s doing much better. His cough from this virus was downright scary.

We are both completely burned out. Barry has not been writing, although he has re-surfaced on Facebook.  We both appreciate so much the notes, emails, phone calls, etc. that we receive from you. Please forgive me if I can’t always pick up the phone or reply to emails.

And the food.  After my last communication, so many of you offered to cook, and we have taken a few of you up on it.  We have again a full freezer and I will get in touch with those of you who offered when we need more food.  Between our travels to Stanford, my attempts to work as much as possible while I can, interfacing with all of the doctors and nurses, and the rest of the hyper-vigilant life we are leading, cooking is the last thing I can do.

The things that give us pleasure, though, are very sweet.  Our new grandson, Silas (http://silascampins.blogspot.com/) and our granddaughter, Mimi (http://mimiendelman.blogspot.com/) top the list.

We are going to Big Sur next weekend for a quick getaway while we can, and some dear friends are bringing food for our seder on Monday.

We are also grateful to the doctors, nurses, physician assistants, nurse practitioners and case managers at Stanford.  We don’t have to second-guess, get second opinions or do our own research. Stanford does it all, including interfacing with the insurance company when there is a denial or delay in approving prescriptions or procedures.  And the drive to Stanford is beautiful.  It’s only about 35 minutes on one of the most beautiful freeways in California, 280, with no trucks and hardly ever traffic.  Much better than driving across town.

We are both also thrilled that the health care bill passed.  While it has some major flaws, it is a first step and could definitely even effect us, the lucky ones with insurance, with the ban on lifetime limits.

Wishing everyone a joyous Passover, a happy Easter and a beautiful Spring.

Love,

Bonnie