Dear Friends and Family,
I had a long phone conversation the other day with our dear friend Patricia. She asks many of the same questions that many of you do, so I thought I’d repeat some of my answers for today’s update.
“How’s she doing?”
“It’s remarkable to be discharged thirty-three days after an unrelated donor transplant, even for a younger patient. She’s come such a long way and been through so much. Nancy has had four separate extended hospitalizations. But now, she’s getting a little better each day.”
“Will she need to go back a fifth time?”
“We don’t know—that’s why we’re required to live close to the hospital in Salt Lake City. Each week, we return to the hospital several times. Fortunately, we only go to the outpatient clinic. We hope never to be admitted to the hospital again. We hope no problems come up during this phase of Nancy’s recovery.”
“Any problems?”
“Yes. Though we’re out of the hospital, there are still challenges. Nancy has her donor’s immunity now. But by design, it’s being suppressed to ease it into her body. It’s like being able to only drive a new car under sixty-five miles per hour for the first 1,000 miles. You might call it the ‘break-in’ period. So with Nancy’s new immunity not yet at full strength, infection is still a major concern. It’s nowhere near the way it was before the transplant when she had zero immunity, but Nancy still needs several medicines to protect her against germs. She even has to wear a mask if she goes outside the apartment, which makes it hard to go to a restaurant or movie.
“During the next two months, the immunosuppressing medicines she is taking will gradually be withdrawn. As that happens, Nancy’s other major risk comes into play. It’s called graft-versus-host disease, or GVH. While the donor white blood cells were a 10/10 match with Nancy’s, they are still designed to attack things that are foreign. Everything in Nancy’s body is foreign to her new white blood cells. Once she is off immunosuppressants, the donor cells might attack her skin, bowel, liver, or other organs.”
“When will you know if she has that graft-versus-host thing?”
“Nancy is thirty-nine days post-transplant. By day one hundred, we should have a pretty good idea. We’ve been told to expect some graft-versus-host disease, but we hope for a minor amount. Seventy to eighty percent of patients Nancy’s age gets some graft-versus-host.
“Finally, even though Nancy has survived four long hospitalizations for maximal chemotherapy and the bone marrow transplant, there is always the chance that her leukemia will return. It will be a couple of years before we can feel safe that she is cancer free.
“All that said, Nancy is making steady progress. She is able to eat more at each meal. She is increasing her exercise one minute every few days. She is waiting for her body to heal, so each week there might be fewer pills in the world’s largest pillbox.”
P.S. For those who have asked for our Salt Lake particulars: Nancy Winn, Apartment 3, Sugarhouse Village Inn Apartments, 1339 East 2100 South, Salt Lake City, Utah, 84105. I still travel to Woodland at least once a week for the mail, to water the plants, and to pick up clothing that Nancy now wants to wear. We have a phone in our apartment, but we haven’t bothered to even find out the phone number. However, our mobile phones do work in the apartment. Nancy actually does answer her phone on occasion, but even when she doesn’t, she always smiles when she listens to your messages.
Summary: Psychologists list “moving” as one of life’s major stresses. The relocation to our apartment in Salt Lake City has been just the opposite. Nancy’s enjoyed a quiet, peaceful period since leaving the hospital. She is “homing in” and getting used to being normal. Each day, I see increased well-being—both physically and mentally.
With much love,
Winnie