Cytarabine Round Completed

            Happy Labor Day! We arrived at MGH the Friday of Memorial Day weekend for a week on Lunder 10, the inpatient cancer floor. Now David’s been back in Lunder 10 for a week, public school is in session, and dusk falls earlier once more.

            Sunday morning David had the final 3 hours of high dose cytarabine; he ate a bit of breakfast, but nausea is still an issue. An anti-nausea medication that he tolerated earlier, Zofran by IV, gave him an odd reaction. Dehydration would cause the cytarabine levels in the bloodstream to rise and raise the risk of cerebellum damage. The cerebellum is the back part of the brain that controls fine motor movements and coordination, including the ability to walk.

            For now, we wait and see. Dr. Chen and Dr. Fathi will decide when to give David the DLI (Donor Lymphocyte Infusion), using the white blood cells Sam donated two weeks ago.

The hope is that the cytarabine chemotherapy will destroy most of the leukemia over the next week,  and Sam’s infused cells will attack the remaining blasts in an effect that’s called GVT (graft versus tumor). The stem cell transplant did not accomplish this.

A Better Evening

             With great relief I can report that David sat up and chatted with Aleks White and us this evening. Yesterday he was really sick. He hadn’t eaten all day and couldn’t keep down small sips of Gatorade, or even, ironically, the anti-nausea pill the nurse gave him a half-hour before his evening chemo. But they’ve worked on some IV meds and he looks and feels better. Sleeps a lot and still hasn’t eaten, but he ordered a simple meal while we were there, so he’s still optimistic about food.

Back to Lunder 10, MGH

          At 5:00 p.m. this evening, David was re-admitted to Lunder 10, the oncology inpatient unit at MGH. Around 9 p.m., he started the new round of chemotherapy: high dose cytarabine. Cytarabine is one of the two chemotherapy drugs David had at Walter Reed Medical Center (dearly beloved Wrenmimic). [He will not be receiving daunorubicin, the extremely toxic drug that probably caused his heart damage.]

          For this round, he will receive 2 grams of cytarabine every 12 hours for 6 days: a total of 24 grams. 36 grams is the maximum dose. Dr. Fathi, the oncologist, hopes that the 24 gram dosage will lessen the likelihood of cerebellum damage. The cerebellum is the lower part of the brain, attached to the brain stem. It controls fine motor movement, balance and walking, posture, and motor learning. The medical staff will monitor his motor skills every day.

          David looks better than he has since early April. He’s gained 30 pounds, though still light at 6’1” and 170 lbs. His beard is full and bushy (he’s not allowed to shave, because of the bleeding risk due to low platelets). The beard probably won’t survive the chemo.

          We got back on Saturday, 23 August, from a lovely week at a rental house in Clinton, Connecticut, near the Long Island Sound. Sam flew in from Provo, Utah and he, David, Jim, and I were together all week. R’el visited each weekend, working hard Monday through Friday at her new job as an attending psychiatrist on the Latino unit at Bellevue Hospital in New York City. Peter worked in the Bronx Monday, Wednesday, and Friday; Xiomara worked at Mt. Sinai Monday, Tuesday, and Thursday. They commuted to Clinton, via car or via Metronorth train to New Haven. Annie arrived in Boston on Wednesday evening. She has been a full-time missionary in Taiwan, and we hadn’t seen her for the past 18 months. She’ll be at home until 1 September, when she returns to the University of Wisconsin in Madison for her junior year.

          Wednesday afternoon, David, Jim, and I drove to MGH to learn of David’s latest treatment plan. Sam came along to spend the afternoon with his friend, Kyle. He needed to use the internet at MGH (the Clinton house internet was unreliable), so he came in with us. While we were sitting in the exam room, Dr. Chen, the transplant doctor, dropped by, and was very surprised to see Sam. He arranged for Sam to return on Friday, 22 August, to donate lymphocytes (white blood cells—different from the stem cells he donated for the stem cell transplant 16 June). This involved sitting for about 4 ½ hours while a needle removed his whole blood from a vein. A machine then separated out the lymphocytes and returned the other blood cells back to his bloodstream. They then froze his lymphocytes and plan to infuse them into David’s bloodstream at the nadir, when David’s white blood cell counts hit bottom about a week after the 6 days of cytarabine infusion ends. Hopefully these donor white blood cells from Sam will recognize David’s remaining leukemia cells as foreign and attack them: ‘graft versus leukemia’. Of course, as always, there is the risk of ‘graft versus host’ disease, where the donor cells attack David’s healthy, fast-growing cells of the skin, gut, and liver.

          It’s been a rough transition, from the relief of leukemia remission to this disappointing relapse. The prognosis is not good, but there’s hope that David can achieve a second remission. We appreciate your continued thoughts and prayers. I’m very grateful that David was well enough to enjoy the vacation week with our family. It helps fortify us for the next round.