February 2021 Update

Happy 2021 and Chinese Year of the Ox! We hope you and your families have stayed as healthy and sane as possible during this tragic COVID pandemic and chaotic vaccine rollout.

Health: This update is overdue. We’ve been waiting for a trend of good news to share from weekly blood tests and doctor appointments post-transplant. The challenges continue to be rehabilitation of my two ruptured achilles and an unusual case of graft-versus-host disease (GVHD) where my new immune system destroys healthy blood cells.

I was making good progress rehabbing my achilles until partially re-tearing the right one in late October and landing back in a walking cast. I am now back on track and dreaming of returning to trail running this year.

The biggest challenge has been GVHD. My hemoglobin counts stabilized following Prednisone treatment and Rituxan infusions, but then my white blood cell and platelet counts dropped precipitously in November and December as I tapered off Prednisone. UCSF tried weekly Neupogen injections, which I also received after my transplant to stimulate white blood cell production, but the injections didn’t work and left me very fatigued and nauseous.

Good news came in January when another bone marrow biopsy showed no relapse of Myelofibrosis, confirming UCSF’s hypothesis that the issue is not production of blood cells in my marrow but their destruction by GVHD. I’m back on Prednisone to suppress GVHD. I feel better but it has whacky side effects at high doses — bruising, edema, insomnia, and shaking. UCSF is planning to remove my spleen in the next month or so, after giving me some vaccinations against bacterial infections, to stabilize my blood counts when I taper off Prednisone.

Family: Tam is enjoying working with a former USAID colleague’s law firm advising US and international non-profits. It was wonderful to have all three boys home for the holidays. Tyler is working at a new AI start-up in LA. Ryan is at Northwestern University studying cognitive science. Kai is at Redwood High School in Larkspur, mountain biking and surfing whenever possible. We hope that Northwestern and Redwood return to in-person classes soon. We bought the house we were renting in Larkspur and love hiking our redwood trails, even at my slow pace.

We appreciate all your thoughts and support and look forward to welcoming you to northern California as soon as the pandemic subsides!

All the best,

Steve