Seventeen Months with David

David Hazen Johnston on May 6, 2011 (the day of Peter’s and Xiomara’s wedding in New York City).

        I was just waking up in Peter’s and Xiomara’s guest room in the Bronx when my cell phone rang. David was calling from Korea; he was in a hospital in Seoul; he had leukemia. It was March 19, 2014. We chatted and then he asked, “How are you feeling?” “Calm,” I said, “I don’t know why, but I feel calm.”

        Exactly a week later, Jim and I drove to Dulles Airport, near Washington, DC, and met David and his army travelling buddy at baggage claim. David was admitted into Walter Reed National Military Medical Center. A second bone marrow biopsy confirmed the diagnosis: acute myeloid leukemia (AML). About ten days later we learned the sub-type: FLT3-ITD. It’s one of the deadliest forms of leukemia; the five-year survival rate is about 5%. Leukemia is a blood disease: the bone marrow overproduces immature white blood cells, crowding out good white cells, red blood cells, and platelets.

        Over the next eight weeks David rarely left his hospital room and I spent most of each day with him. He went through two rounds of harsh chemotherapy, appendicitis, surgery to remove his large intestine after a dangerous C-diff infection, loss of eyesight due to retinal bleeding, fatigue, nausea, vomiting, and slurred speech so bad most of the doctors couldn’t understand him. During that time I became David’s voice, speaking for him to the nurses and doctors.

        One evening, when the outpatient clinics at Walter Reed were emptying out, I paced the halls, talking to Jim on my cell phone. I was lonely. And desperate. David was very sick, losing weight from not eating anything, not able to read or speak. I said, “This is so scary.” Jim replied with a sentence that became my mantra, “It’s sad; it doesn’t have to be scary.

        David did regain his eyesight and normal speech. But the first chemo damaged his heart, causing him to hunch over and walk like a sickly old man for months.

        Just before Memorial Day 2014 David attained remission and he and I were medivacked to Massachusetts General Hospital in Boston for a stem cell transplant. Sam, David’s younger brother and best possible match, was the donor. Sam went to the outpatient clinic and sat in a chair while an IV tube removed his blood out of one arm. A machine separated out the stem cells and returned most of the blood back into his body through a tube in his other arm.

        The actual transplant in June was anti-climactic, a simple intravenous transfusion. David returned home the next day. For 100 days of extreme vulnerability to infection, he couldn’t go anywhere: no movies, shopping, or ball games; even church was off-limits. Our friend Paula had thoroughly cleaned our house and we started a routine which lasted over a year: heating all food to 165° and soaking countertops, table, and dinnerware in a bleach solution.

        On day 56, August 12, 2014, we received very bad news: 30% of David’s white blood cells were leukemic. There were still aggressive treatments to try, but on October 15, the latest round of chemo failed. Dr. Fathi, his oncologist, said David’s chances of long-term survival were “infinitesimal.” If David were an older man, treatment would stop. However, since he was only 27, Dr. Fathi was willing to try some experimental drugs to extend his life for some months.

        We tried cabozantinib, which failed. Decitabine kept the bloodstream white blood cell count down and we all hoped for another remission, but a bone marrow biopsy revealed that it was not affecting the production of leukemia. CPI-0610 was so new it only came in 25 mg pills. David had to down 12 large capsules each morning. When the last of these clinical trials failed, David continued to take hydroxyurea, which killed white blood cells (and healthy red blood cells and platelets) in the bloodstream. However, it didn’t affect the bone marrow, which continued to produce leukemic cells.

        The hydroxyurea regimen was effective for months but eventually the leukemia took over. David’s throat became so raw and painful that he could barely speak or swallow. Again he would turn to me to answer questions from the nurses at the clinic. By mid-July he was taking in fewer than 300 calories a day, and then cut down to just warm water and honey.

        David began hospice care on July 30. I was grateful for the emotional and medical support. Luis, David’s main nurse, trained me to manage intravenous hydration and pain medication and he helped us all prepare for death. He wore bright tropical shirts and colorful pants. We got a hospital bed and converted the dining room into David’s bedroom. For a few days he was able to walk into the kitchen to heat up more honey water or into the family room to watch a movie. It made him more comfortable to live exclusively on the first floor.

        Annie had spent the summer studying abroad in Tianjin, China, about 70 miles from Beijing. We hoped David would live to see her again. She arrived home Monday evening, August 10.

        The last few days of David’s life were subdued. He lay in bed, drifting between waking and sleeping. He took his final breath around 11:00 p.m. on Wednesday, August 12. Forty minutes later Victoria Henriquez Johnston, Peter’s and Xiomara’s second child and our first granddaughter, was born in New York City. Jim, Matt, Annie, and I sat by David’s body until Michelle, the hospice night nurse, came to confirm his death.

        Since David had donated his body to the University of Massachusetts Medical School, a hearse arrived around 3:10 a.m. to take his body away. The school used his body to test an experimental lung device. The fact that David was young made him an excellent subject. The ten engineers who conducted the research were reverent and mindful of how close in age David was to them. Michael Doyle, director of anatomical donations at the medical school, told Jim:

        When talking to family members, I always try to stress the impact that a donation has on me, the students, the doctors, and the engineers. I want to stress your son made a difference. I have three daughters. Their pediatrician was also my wife’s pediatrician when she was a child. He can tell me every single thing about “his” donor, the body he studied in medical school all those years ago.

        Exactly one month after David’s death we held a burial at the Westview Cemetery in Lexington. A gentle morning fog rested on the lawn and a small flock of wild turkeys gobbled by. A soldier played Taps and two other soldiers carefully folded the flag which draped the coffin, and handed it to a young sergeant, who presented it to Jim and me. Our bishop said a few words and Jim dedicated the grave.

        An hour later we were at the church with the Massachusetts General Hospital bloodmobile, for a blood drive we organized in memory of David. Over 60 people came to donate blood. It was fitting that the burial and this life-affirming drive were in the same day.

        David lived 511 days after that first phone call from Korea. Our days were spent learning patience and living with hope and sorrow. Throughout the experience we could feel the love and prayers many people offered for us.

        David’s body rests two miles from our house. But his spirit lives on. Likely he has met my mom and dad, Jim’s dad, and many other family members who have died. Probably he hasn’t said much—he never was much of a talker. He’s certainly out of pain and well-cared for. We miss him.

Matt, Annie, Sam, Savannah, Peter, R’el, Andrew, Xiomara, David, Mary, and Jim at home, Christmas 2014.

David Hazen Johnston, Christmas 2014.

What are your memories of David?