Dear Family and Friends,

Barry and I got home on Tuesday after spending 9 days in virtual isolation in the hospital. He had fevers, headaches, chills, sweats, intestinal problems, etc., not to mention the anxiety and depression. While we may never exactly know what the diagnosis was/is, he’s much better. The theory we like the best, according to the amazing infectious disease doc, Wes Brown, is that he had an underlying infection, probably sinusitis, and then had fever reactions to IV antibiotics, probably Vancomycin.

Because Barry has no immune system to speak of, any tiny infection can be very dangerous. That’s why we can’t see people here in Palo Alto, except for our immediate family and some very close local friends who can spell me when I need to do errands, or do something for myself (what a concept!). Barry is only allowed to be in the apartment, in the car on the way to the hospital or Cancer Center Infusion Treatment Area (ITA), or outside taking a walk. When he is anyplace other than inside the apartment, or inside the ITA or a hospital room, he has to wear his HEPA Filter Mask. He needs someone with him at all times. It’s a very limited life, but the hope is that this will save his life.

A few words about the Stanford medical staff. When in the hospital, Barry was seen by the BMT (Blood and Marrow Transplant) team. We got Wes Brown involved after a few days. For some reason she hadn’t been notified that Barry had been admitted and she didn’t get my original voicemail message soon after he was admitted. She is our go to doc when Barry is sick. She knows him very well and has saved his life more than once.

When I called her again after four days she came right over and was completely present for us. She told us that she was looking at patterns of Barry’s fevers (constantly from home) to try and figure things out. Last Sunday (!) morning I called her at 8am (I have her cell and home #s) because Barry’d had a really bad night. She got to the hospital at 9 (despite Stanford graduation traffic) and was very reassuring about his progress. When she left she said, “I’m so glad you called. Call me anytime.”

Sunday night the nurses from the ITA called Barry to see how he was doing and to say they were looking forward to us coming back. Since these people are our social life, it means a lot that they are so caring, not to mention extremely competent.

Today is Day 30. We are scheduled to be here for 100 days post-transplant. Hopefully the next 70 days will be uneventful.

Thanks for all of your phone calls, emails, Web site comments, cards, etc. Please don’t be surprised if I can’t respond.

Much love,

Bonnie