I WAS FLYING BLIND. NOTHING IN MY EXPERIENCE gave me a frame of reference for this journey. My son Mark was dying of acute leukemia, and the two of us were racing across the margins of the Chihuahuan Desert east of Van Horn, searching for the new top leaves of the creosote bush, which when brewed into a tea were considered a cure for the disease by some Mexican curanderos. I had learned this in a letter from a man who was doing twenty years on a drug charge in federal prison. I have received hundreds of letters from people in prison, but they always wanted something from me. This guy just wanted to do me a favor. Mark and I both knew that it was the longest of long shots, but long shots were all we had.
The trip was in early March, about six weeks before Mark died. It was long and arduous, and it sapped what little strength he had left. The letter had explained that the two of us had to leave a “gift of water” for the creosote plants. We flew from Austin to Dallas to Midland, then drove 125 miles to an isolated place within sight of the Davis Mountains, two liter bottles of Evian in the seat between us. Mark slept almost all the way, racked with fever, chills, and nausea. After collecting three bags of leaves, we spent the night in a Midland motel, the kid so sick that I wondered if he’d make it through the night. I was awake until two in the morning, talking long distance to friends and family, trying to figure out our next move.
Mark’s condition was diagnosed in July 1996 at a cancer clinic in Atlanta, Georgia, the city where he grew up after his mother and I divorced and where he had lived since his own divorce in early ’94. He had undergone six intensive doses of chemotherapy, whose powerful toxins destroy cancer cells—and good cells as well. I suspect that one day we’ll look back at this wretched procedure the way we look back with revulsion at frontal lobotomies. But chemotherapy was the only treatment available for Mark’s type of leukemia. It wouldn’t cure him, but it could possibly put the cancer into remission long enough for doctors to perform a bone marrow transplant.
We had searched without success for a bone marrow donor for nine months. Unfortunately, no one in our family was a match, and neither were any of the 2.7 million people on the National Bone Marrow Registry. Among Caucasians, a match exists for a given patient about 80 percent of the time; among minorities, the figure drops to about 50 percent. One doctor speculated that finding a match for Mark was so difficult because there are traces of Native American blood in our family, but he was just guessing. Anecdotal evidence suggests that genetic tissue typing for bone marrow produces unexpected results. In 1993 Anne Connally, the daughter-in-law of John Connally, turned out to be the world’s only perfect match for a sixteen-year-old Japanese girl, who is alive and doing well today because Mrs. Connally was tested and added to the national registry in 1990.
In January and February of this year, Mark’s family and friends had staged testing drives in Atlanta, Little Rock, and Austin, adding another 1,500 people to the national registery, yet still there was no perfect match. We were desperate. Even as we slept, even as we prayed, the clock was ticking. After my wife, Phyllis, and I ran a full-page ad in Texas Monthly pleading for help, people called from all over the country, volunteering to be tested, extending their support, and contributing money to the Leukemia Society of America. Rosalind Wright, a sister of Austin writer Lawrence Wright, telephoned from Lexington, Massachusetts, where she had rallied thirteen tribes of Native Americans and personnel from a military base to get tested. A friend in California who is a Buddhist monk sent a seed blessed by the Dalai Lama with instructions on how Mark was to ingest it. The pilgrimage to the desert was only one in a series of things we tried.
The worst day of my life—worse even than the day Mark died—started early the next morning, when I drove Mark to Midland International Airport for a flight back to Atlanta. Until then I hadn’t realized how far the disease had progressed. He was so weak that I doubt he could have walked unassisted to the gate. I helped him into a wheelchair and pushed him. He had eaten almost nothing for a week, so we stopped at the coffee bar; I bought him a Coke and a banana, and he was able to keep them down. For two days he had said almost nothing. A question that needed a response got a nod or a shake of the head. Looking at him then, as pale and weak as a newborn puppy, I couldn’t help but remember that a year before, Mark and I had worked out together at my gym in Austin, both of us fit and seemingly invincible. As recently as Christmas 1996 he had looked reasonably strong and cheerful. But now you could almost see his life leaking away.
When it was time for him to board the plane, we hugged and kissed, knowing it might be our final good-bye. I was close to tears. Watching my son shuffle slowly down the ramp to his plane, his hairless head bowed in agony, his clothes hanging off his emaciated frame, a kid who had just turned forty but looked ninety, I kept thinking: Why him? Why not me? When a child dies, “Why?” is the last question to go away.
DURING OUR YEARS TOGETHER, we said a lot of good-byes, Markie and me, but one in particular sticks in my mind. He must have been around ten—a bright, resourceful, resilient, uncommonly stubborn kid—and he was dogging me to take him along