by Larry Berman
Elated with news that Chon was alive, Bud threw himself into the effort, enjoining others in influential positions to join him. Two months after hearing from Chanh, Bud was seeking an appeal for Chon’s release on humanitarian grounds. In October, Paul Wolfowitz, then assistant secretary of state for East Asian and Pacific affairs, wrote Bud that ODP was aware of “his interest in Chon” but the prospects were not good. “I don’t need to tell you about the people with whom we are dealing, or how difficult they can be in negotiation.”57
On July 30, 1984, Elmo turned thirty-eight years old. “I find myself feeling very lucky that we have had 38 years to love and appreciate him,” Bud wrote to Mouza. “Those years are made more precious by the fact that we might not have many more with him.”58 Elmo believed he could conquer his cancer with mental strength. He had sidestepped polio, heart surgery, and Vietnam, so there were few who would challenge the assumption. Elmo was one of the lucky “terminal” patients, having found a bone marrow transplant match in his family, sister Mouzetta. He had won the lottery, a 25 percent probability that a family member would be a match. As he was preparing for his procedure, Aunt Saralee wrote that “each day I say a prayer that you will beat your latest challenge. I truly admire your courage, Elmo. Anyone can be brave on a battlefield, but true heroes are those who face whatever vicissitudes life hands them with squared shoulders and a smile.”59
Elmo was admitted to the Fred Hutchinson Cancer Center in Seattle on February 11, 1986. A two-day course of chemotherapy began the next day, followed by six days of radiation. Bud was elated to learn that the attending physician was Dr. Donnall Thomas, the originator of the bone marrow transplant process and the head of that branch at the Fred Hutchinson clinic. Bud started a “Dear friends of Elmo” letter to keep everyone updated on his son’s progress. “Day zero” for Elmo was February 20, when Mouzetta entered the center for the procedure that would transfer her marrow as a replacement for her brother’s dead marrow. The night before the procedure, Kathy and Maya spent the night with Elmo in his hospital room. A few hours before Elmo underwent his treatment, he gave his father a sealed letter, to be opened only upon his death.
Dear Dad,
I saw the tears in your eyes as you read the letters I left the family. I know more than anything I wrote, it was the helpless desperation and agony as death approached someone you loved that caused those tears. . . . I also know you continued to help us with your spirit for our sake. You made a difference. You lightened our burden. Both in Vietnam and with my cancers, we fought battles and lost. Yet, we always knew even when the battle was clearly desperate, that our love could not be compromised, and that however bad the odds, we were incapable of ever giving up. After my death, your strong burning torch of love, which only death extinguished from my being, will light Maya, Russell, and Kathy. . . . How I loved you. How I would have loved to have continued to fight the battles by your side. You always made a difference. You made my last battle, the journey to death, more gentle, more humane.
I love you, Elmo.
Bud stayed with Mouzetta until three a.m. at the hospital. “All the Zumwalts salute a gallant Mouzetta who has never wavered from her strong desire to provide Elmo her life-giving sustenance,” wrote Bud.60 Elmo called her room to relay the message that “he was now receiving her beautiful, red, non-cancerous bone marrow and was deeply grateful.” In his journal, Bud wrote that as day zero began, “the doctors predict that Elmo, whose blood counts are now close to zero, will feel progressively weaker each day for several days as those counts drop to zero.”
For the next two or three weeks, Elmo would have no immune system whatsoever. The danger of infection would be high. Enclosed in a nylon eight-by-ten cubicle filled with high-pressure germ-free air, surrounded by family pictures and X-marked calendars, Elmo suffered horribly from the chemo and radiation damage to the mucous membranes of his mouth, throat, and esophagus. Morphine was regularly administered to subdue the horrible pain of the mucous passages. He was connected to a catheter in his abdomen because of the anomalous veins resulting from his cardiac birth defect.
By day six, doctors learned that Elmo’s body was destroying platelets much faster than usual. It was normal for a patient to use up platelets at a high rate as the tissues damaged by radiation and chemotherapy were replaced. Mouzetta was sent to Puget Sound Blood Center for a procedure that removed platelets for Elmo from her bloodstream. During the session, Bud received a call from Elmo, who in a broken voice said, “Dad, maybe it’s just the drugs or maybe it’s psychological, but I am really feeling deeply distressed and hurt that you and Mouzetta went off to lunch and out of contact when I was suffering.” Bud said, “Elmo, I’ll be right over.” At that point, Elmo broke into a laugh, having demonstrated once again the Zumwalt humor.
On day eight, Elmo lost all his hair within an hour. His mouth, throat, and esophagus were bleeding. “The pain is so excruciating that the nurse took him up to 12 milligrams of morphine per hour,” Bud wrote in his journal. “This left him so groggy that he fell hitting his head on the wall and cutting himself with serious bleeding.”
On day twelve, Mouzetta was asked to give more platelets. The next few days were critical for evidence of the graft going forward. “The next big test, after the graft taking, was to survive the graft vs. host disease that began as Elmo’s body sought to resist the encroaching graft, while also trying to avoid infections that can result from having no immune system,” Bud wrote in an update to Elmo’s friends.
On day fifteen, Bud learned that he, too, would be needed to give platelets. The problem was that Mouzetta’s provided a fully matched human leukocyte antigen (HLA) type; Bud’s were a half-matched HLA type. Elmo called them both to his room and vetoed the idea of “changing his luck.” On day nineteen, Elmo’s brother Jim arrived in Seattle. Elmo confided in Jim the agony he was going through, “the skin around his groin coming off like sheets of tobacco a few days ago—blood bruises popping up in various parts of his body due to low platelets—the horrible sensation of thick, gooey slime sliding down his esophagus and coagulating in his stomach.” He had been able to endure only because of his love for his wife and children. That same day, Elmo received the great news that his white counts and platelets had gone up. When Bud left that evening, Elmo asked him to drive by his hospital window. “He was standing in the window giving us a ‘V for Victory’ sign with both arms.”
In a letter to Elmo’s friends, Bud explained that the doctors thought Elmo was doing better than the norm. He was “always keeping his eye on the ball that nothing must interfere with his taking every recommended precaution in order to survive.” Elmo was a fighter. He was in regular communication with most members of his boat crew and already planning a trip to San Diego. He never thought he would not beat the cancer. He could not allow that thought to ever enter his mind. “When I found out that I had a terminal illness, I realized that being told you are going to die is not the worst thing in the world, but living miserably, because you have that knowledge, could be . . . hope is a successful, pragmatic way of life in the real world.”61
On March 24, day thirty-two, Elmo was allowed to leave his encasing bubble. Russell was given the honor of walking in first, followed by Maya, Kathy, and Bud. “The joy was emotional to behold,” wrote Bud. Concerned that many of his fellow sailors in Vietnam might have also come home with time bombs inside them, Elmo agreed to allow ABC’s 20/20 to film and interview him during his battle.
By day thirty-four post-transplant, Elmo was making “remarkable progress.”62 He’d had no fever since day eighteen; “his white counts, polys, platelets and hematocrit counts all rose dramatically.” The greatest danger between days thirty and sixty was pneumonia. Elmo’s original immune system had covered him for the first thirty days, but after that, his new immune system, not yet fully able to deal with the invasion, was not strong enough to fight off pneumonia. Still, Elmo was released as an outpatient, allowed to live in the couple’s rented apartment in Seattle
. Each evening Kathy administered intravenous feedings until Elmo’s daily calorie intake reached 2,500. “We are all afraid to be as optimistic as we feel,” wrote Bud.
On day ninety-six, four days earlier than anticipated, Elmo was discharged from the Hutchinson Center.63 Bud arranged for a corporate jet from one of the boards he served on to take them all home from Seattle. Elmo had avoided being one of the 20 percent who fail to make it through bone marrow transplant and now had a 55 percent probability of total recovery. “They tell us if he makes it through the first year, his odds would be much higher and if he has not had a recurrence by three years from the date of the transplant, he would be considered cured,” wrote Bud in his final update to friends. Bud ended with a touching comment for Elmo’s wife, Kathy, “who guarded him, loved him, and shepherded him back to health like a protective tigress; to his sister Mouzetta, who so unselfishly gave of herself time and again to save him; to Elmo, for his superlative courage.”
Elmo had been reluctant to write about himself because his story was so personal and painful. It was his friend Walter Anderson, a Vietnam veteran and at the time editor of Parade magazine, who convinced him that the story needed to be told. Bud and Elmo quickly became celebrities, known for drawing attention to what Vietnam veterans went through in Vietnam and what happened to them after they returned. Through a bestselling book, numerous television appearances, and a 1988 TV film based on the book, starring Karl Malden as Admiral Zumwalt and Keith Carradine as Lieutenant Elmo Zumwalt, the story became known to a wide audience in this country and worldwide.
When ABC’s 20/20 segment, “Agent Orange and Cancer—the Aftermath of Vietnam,” finally aired, Elmo said he was looking for a miracle. Shortly thereafter, letters poured in from around the globe. A person in Tulsa offered a food supplement called Traumune developed as an immune system booster, made from shark cartilage and only recently available in United States, writing, “We believe in miracles, too.”64 Dr. Bernard R. Leipelt, founder and president of the International Research Foundation for the Advancement of Preventive Medicine, offered to provide alternative medical experts in Germany. James Lee of Notre Dame, Indiana, offered biophysically efficient procedures to bring homeostasis, balance, back to Elmo’s body while ridding it of cancer. “You should approach your cure from the perspective of the cell” by drinking only the purest of waters; eliminating meat; eating only raw fresh foods, fresh wheatgrass juice in particular; completely avoiding sodium fluoride in every form because Japanese findings indicate that sodium fluoride damages DNA and the immune system; considering beta-carotene, aloe vera juice, heavy dosages of ascorbic acid, B-17, and all B vitamins; and avoiding all radiation treatments.65
Bud and Elmo were also searching for their own miracle, joined by an extraordinary team of physicians and researchers in the Hematology/Oncology Division of the Naval Hospital and elsewhere. Bud’s personal physician from Vietnam, Dr. Bill Narva, helped arrange for Elmo to meet with the very best physicians and was constantly searching for new experimental programs for which Elmo might be a candidate. With Elmo weak and bedridden, Bud redoubled his own effort to get Elmo into an experimental program. In desperation, Bud called Dr. David Duggan in Syracuse, who had been running trials of interleukin-2 and beta interferon.66 In a sobering note to Elmo, Bud wrote that “with two separate types of lymphoma, it might be difficult to get you on a protocol since all the protocols desire pure data—i.e., how does it work on Hodgkin’s or how does it work on NPDL [nodular poorly differentiated lymphocytic lymphoma]. The mixture would spoil their data.” Elmo was not eligible for the experimental programs.
Sometime in 1987, while Elmo was still fighting his cancer, Bud was called by Dr. E. Donnall Thomas, who had cared for Elmo during his treatment. Thomas was a pioneer in marrow transplants who in 1990 received the Nobel Prize in Physiology or Medicine for this lifesaving work. He reminded Bud that ten thousand people were dying each year simply because they lost the family-match lottery. Thomas envisioned creating a data bank from a much larger population. The goal was to create a coordinated National Marrow Donor Program (NMDP) by tying together transplant centers, blood centers, and donor centers to create a national registry of volunteer donors. Bud agreed to serve as director of NMDP and was soon made chairman.
During the next decade, the Donor Registry grew from thirty thousand volunteers to four million; a million foreigners were also carried in overseas registries. The odds of finding a match multiplied greatly. Bud used his influence with Congress to secure an almost $60 million annual budget for a federally sponsored program. “One of the special sources of satisfaction for me is the significant number of Vietnam veterans and their children for whom we have identified matched donors and thus provided transplants through the NMDP.”67 In 1991 Bud established the Marrow Foundation, a tax-exempt foundation that raised money to add to the federal funds that support NMDP.
Since 1975 Admiral Tran Von Chon had been a prisoner in his home country. Twelve years later, Bud was still working tirelessly for his release. In a letter to Richard Schifter, assistant secretary of state for human rights and humanitarian affairs, Bud tried getting Chon’s name put “on the list of those who have been deprived of their human rights.”68 Bud wanted Schifter to understand that Chon “is a saintly man, a devout Buddhist, and was, throughout the years of US involvement in Vietnam, totally dedicated to the U.S./Vietnamese partnership and a firm believer in the democratic cause. He has, for these past twelve years, paid the price for that loyalty.”69 Was there anything Schifter could do to bring pressure or influence on the Vietnamese?
Two months later, Schifter reported that he had personally been in touch with the embassy in Bangkok, and they were willing to consider Chon and his family for admission into the United States whenever the Vietnamese issued exit permits. Everything still depended on the willingness of Vietnamese authorities.70 One bit of good news soon arrived from Truc, who reported that his father had been released from prison but was under constant surveillance. Chon could not risk writing directly to Bud, but through a message relayed by his wife, Chon wanted Bud to know that he was “very sad” to hear about Elmo’s illness.71
In the early-morning hours of August 13, 1988, Elmo’s battle was coming to an end. Bud had devoted literally every minute of the past year to finding a miracle cure for his son. Now too weak to rise from bed, Elmo was down to less than a hundred pounds. Unable to retain nourishment, he began saying his good-byes, dictating a note to his uncle Jim and Aunt Gretli, “who between them, nurtured me at birth and in terminal circumstances, with love and appreciation for their lifelong support.”72 With his brother Jim at his bedside, Bud asleep on a couch nearby, and Kathy upstairs exhausted from the weeks of personal hospice care, Elmo passed away. “I looked over at Elmo again, only to see him take his last breath. His heart, strong in spirit but weakened by his exhaustive battle for life, had finally given out. There was one final sigh and then silence,” said Jim, whose brother was finally released from the pain. Cradling his brother in his arms, Jim decided not to wake Bud and Kathy. They would need their rest.73
Elmo died at the age of forty-two. His death certificate recorded August 13, 1988, 6:30 a.m., as the time and non-Hodgkin’s lymphoma, Hodgkin’s lymphoma as the causes of death. Five days later, his uncle Jim wrote a poem titled “A Magnificent Warrior,” ending with the verse, “His life gave hope to thousands of suffering souls. / It remains a noble inspiration to us all.” Shortly before he died, Elmo had sent each of his siblings a poem titled “Home from the Sea.” The author of the poem was his father, who wrote it on the occasion of Elmo’s bone marrow treatment five years earlier.
A sailor tossed by the seas of life,
Tho torn and tired by the constant strife,
Would cling to hope and his raft of dreams,
Aware that life is a maze of streams,
Each raging, churning and calling out:
Come join my course—shoals are all about.
Saw land and tr
ees at the rim of sight,
Knew day had followed a turgid night.
Sensed rest and joy were a stroke beyond,
Where life could be as a gentle pond.
He turned his eye from the raging sea,
And knew he’s found all Eternity.
Elmo always viewed his cancer as a matter of fate, a statistical incidence of something that happened to people in war. He understood the probabilities were that he would not survive, but he never gave up hope. He also never blamed his father for what happened to him, believing that the defoliation was necessary to save lives. Whenever asked if he had any regrets, Elmo’s answer was the same: “The saving of American lives was always his first priority. Certainly thousands, perhaps even myself, are alive today because of his decision to use Agent Orange.”74
“I absolutely believe, there’s no doubt in my mind that Elmo’s cancer had to be the result of exposure to AO,” Bud readily acknowledged.75 He never expressed any sense of guilt about being the instrument of such suffering, insisting that, given the same circumstances, he would do so again because it saved American lives. “I do believe Agent Orange induced the two kinds of lymphomas from which my son died,” Bud wrote in a letter to a veteran. “I regret that we fought the war. I regret we lost the war. I do not regret the many lives we saved using Agent Orange, even though some of those saved are dying later from exposure.”76
Many have found this position difficult to fathom, coming from a man who had experienced the trauma of losing a son and being the instrument of that terrible weapon for so many others. “I think we did the right thing. In an identical situation, even knowing it was carcinogenic, I would use it again,” said Bud. “We took 58,000 dead. My hunch is it would have been double that if we did not.”77 Bud’s reasoning went as follows: “If I were faced with the same type of situation in which the situation required that I defoliate and if I knew that Agent Orange was carcinogenic, I would again use it for the reason that out of every 4000 sailors exposed to Agent Orange, one would have had lymphoma if not exposed, eight would have cancer after exposure, out of that same 4000 sailors, 2800 would have been killed or wounded had we not used it. Thousands and thousands are alive because of the use of it.”