Decitabine Revisited

Two Years Ago
March 2015

A few more thoughts about decitabine, which stopped working in mid-March 2015.

I knew something was terribly wrong when Faye, the receptionist at Mass General, called to schedule an echocardiogram for David. His heart had been badly damaged by the initial two rounds of chemo at Walter Reed, in the spring of 2014. Since then he hadn’t qualified for clinical trials because of his poor heart ejection fraction. The only possible reason for Dr. Fathi to request a new echocardiogram would be that the decitabine had stopped working and he hoped David would now qualify for a clinical trial.

In December of 2014, Sam emailed to report that the national “Be the Match Bone Marrow Registry” had contacted him. Long before David's leukemia, Sam had done the cheek swab at a booth on campus at Brigham Young University. Now he had been matched with a patient in need of a stem cell transplant. Sam wanted to help, but his first priority was David. If there was any chance David would need Sam’s stem cells, Sam didn’t want to jeopardize that.
I asked Dr. Chen and it came out that he had requested a search of the registry on David’s behalf. Sam showed up as a match, naturally. The only match, in fact. That’s when we learned that Dr. Fathi hoped the decitabine would bring David’s leukemia into remission. If that happened, they wanted to move quickly with a fresh stem cell transplant. Dr. Fathi said, “I don’t want to get your hopes up, but here I am, getting your hopes up.”

That was December. The decitabine continued to control David’s white blood cell count for three months, but when those counts started going up in mid-March, we knew it had only been working on the bloodstream cells, not the cancerous cells in the bone marrow factory.

So, as I said in last week’s post, March 19th is a doubly difficult day. In 2014 we learned David had leukemia. In 2015, we learned that the latest hope had been dashed. We all had hoped: our family, the doctors. It was a bitter disappointment.

End of March 2017

I’m enjoying the afterglow of my visit to Riverdale two weeks ago. We had a cozy snow day on Tuesday, March 14, and on Wednesday Andrew (nearly 4), Victoria (1 ½), and I spent the day together. The best moment was when Victoria returned from an afternoon doctor’s appointment. She came into the apartment and ran to me, arms outstretched, smiling. My heart sang.