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?
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