If this house seems suspended in time, it only mirrors the lives of the family that resides there, Marc and Nan Smith, and their three sons, Sammy, 12, Jeremy, 10, and Benjy, 7. "We had to stop right in our tracks," says Marc, 39. "I can't commit money to things like finishing touches and furniture. If something happened to me now, Nan and the kids would be that much worse off."
That's hard to imagine given the harrowing 21-month-long ordeal the Smiths have already endured. On Feb. 1, 1989, Marc was diagnosed with acute myelogenous leukemia, a cancer of the blood that is usually fatal. Since then, illness has been his constant companion and fending off death an all-consuming preoccupation. He has endured five rounds of intensive chemotherapy, only to see his cancer recur. Forced to consider a bone marrow transplant, his only remaining hope for a cure, Marc was thrust into a bureaucratic maze of donor registries that succeeded only in victimizing him further.
Finally, last March, with all other options exhausted, Marc underwent an autologous transplant, in which his own marrow was removed, chemically purified and then returned to his system. Today his disease is in remission, but the threat of its return remains. "There's so much uncertainty," says Marc as he sits in his kitchen, nursing an iced tea. "I have a tremendous fear that I didn't have before. "
The only time Marc feels invulnerable is at night, when he dreams. "I'm always running around doing things. I've got my hair. I'm normal," he says. "I've never had a dream where I was sick."
Marc's life up until the time he got sick was enviable. Born and reared in New York City, he and Nan, 40, a former teacher, had been married for 15 years. Their boys, active, sports-loving kids, shared their dad's passion for baseball and tennis. In 1988 the family moved into a new, five-bedroom home 15 miles northwest of Los Angeles. Marc, a successful attorney, and two colleagues had formed their own law firm. With Marc bringing in nearly 80 percent of the business, including such prestigious clients as the Marriott hotel chain, the practice flourished. "I was a workaholic," Marc admits, recalling how he used to leave the house at 6:30 in the morning and sometimes not return home until 9 at night. "And I really enjoyed it."
Despite the rigors of work, he played a regular Sunday afternoon game of racquetball as part of his fitness routine. It was in the midst of one of these weekly outings that he began to feel unaccountably tired. Concerned, he scheduled a physical exam for the following afternoon. On Tuesday morning the doctor called back to say that there was a problem with his blood count. He wanted Marc to check into the hospital immediately for further tests.
Marc was shaken by the news, but Nan was devastated. "If somebody had asked me to describe myself before all of this," she says, "I'd have said, 'a dependent, mushy wife.' Marc was always the strong one." That night they learned that Marc had leukemia—and that he had only a 50 percent chance of surviving 18 months.
Chemotherapy was begun the next morning. During a seven-week hospitalization, Marc lost 20 lbs. and experienced his first round of nausea, fevers and shaking—the side effects of the toxic drugs that became a regular part of his life. His hair loss was harder to take. "I knew it was going to happen," he says, smoothing the neon pink baseball cap that has since become a trademark, "but I still wasn't prepared for it."
Uncertain of his long-term prognosis, Nan and Marc decided not to tell the children about his cancer. But with Nan visiting the carpooling the boys to and from school or baseball, it was a futile charade. "First he told me it was a back problem," says Sammy, "but I knew he was lying." Then, on his way to summer camp, Sammy was told by a friend that Marc had leukemia. That night Sammy called home and confronted his dad. Finally, Marc owned up. "I just hadn't had the guts to talk to them about it," he admits.
There were other misjudgments. During his hospitalization and recuperation, Marc was confident that his partners could handle the business. But on Aug. 1, as he lay in the hospital receiving a round of chemotherapy, Marc was served with papers announcing that, without his knowledge or consent, his partners had disbanded the firm. "They never understood what I was going through," says Marc, who is suing his former partners.
Two months later Marc was dealt another blow. He was in his sixth month of remission when his weekly blood test revealed that the cancer had returned. "The worst I've ever been through this whole thing was when they told me that I'd relapsed," he recalls.
Marc's hopes for recovery were reduced to one last-ditch treatment: a bone marrow transplant. Doctors initially look for healthy marrow from a relative or unrelated person that exactly matches that of the patient. An autologous transplant is their second choice. "Using an unrelated donor has an advantage that the marrow is normal," explains Dr. John Hansen of the Fred Hutchinson Cancer Research Center in Seattle, a preeminent transplant facility where Marc was treated. "You always worry when you're doing an autologous transplant that something about the patient's marrow may predispose a recurrence of the disease."
All marrow transplant procedures are expensive ($175,000 to $200,000), complicated and painful. The odds of finding a donor are a daunting 20,000-to-1 and, depending on the disease being treated, the success rate for marrow transplants ranges from 45 to 70 percent.
Before a transplant could be performed, Marc had to be back in remission, and the dose of radiation needed to accomplish that was 40 times stronger than his first round. Worse still, this second remission would last only half as long as the first—giving the Smiths less than four months to find Marc a compatible donor.
They began by contacting donor registries, including the federally funded National Marrow Donor Program (NMDP), the privately supported American Bone Marrow Donor Registry and independent registries as far away as England and Israel. During the eight or so weeks it took for these registries to search their lists for a possible match—none was found—the Smiths launched their own donor drives. They formed the Friends of Marc Smith to publicize Marc's plight through posters, flyers, newspaper articles and TV reports. For a proud and private man like Marc, asking for help was difficult. "Every little thing about my disease had to come out," he says. "I felt very vulnerable."
On the advice of their doctor, they contacted Life-Savers, a fund-raising and do-nor-recruitment organization run by Covina, Calif., pediatrician Rudolf Brutoco, to assist with donor drives and oversee testing. Life-Savers would also keep track of donations made on Marc's behalf to cover the $75 cost of each test. (There are no government funds for testing.)
The relationship with Life-Savers proved to be yet another disappointment for the Smiths. In mid-December, Life-Savers informed the Smiths that there was an $8,000 shortfall between the tests performed and the moneys raised—despite the fact that the family had attracted nearly 1,000 donors and raised thousands of dollars, including $15,000 from junk-bond king Michael Milken alone. They were told they would have to advance $40,000 in cash to pay for future donor tests. "It's very costly to do a drive," says Life-Savers executive director Ken Herron. "If we did drives without any funding upfront, we'd be out of business quickly."
The Smiths were desperate. Finally Life-Savers agreed to accept a letter of credit from Nan's father instead of cash. But the negotiations took a week, and during that time two drives had to be canceled for lack of funds. "It really became a financial thing," says Marc bitterly. "Most people in a crisis situation like this don't have committees, don't have friends and community support, don't have the ability to come up with $40,000. What does the average person do?"
"They die," says Nan.
On January 29th, with his time in remission running out, Marc flew to Seattle for an autologous transplant. Then, literally hours before undergoing the grueling, pre-transplant chemotherapy he learned that Life-Savers had found a donor. Despite Marc's desperate situation, however, the donor couldn't come to Seattle for the procedure until March 2,32 days later. During that time, Marc was put into a laminar flow room, a sterile, 8-by-8-foot plastic bubble to prevent him from contracting any infections. His food had to be sterilized, his bodily wastes had to be put in plastic bags and removed, and his baths had to be taken in sterilized water. "It was like being in prison," says Marc.
Finally, March 2 arrived. Incredibly the donor never showed up. Marc's doctors were unable to explain what had happened. Nor, to their utter frustration, were the Smiths' calls to Brutoco at Life-Savers ever returned. But it is the unnamed donor (all donors are guaranteed anonymity) whom Marc and Nan will never understand. "The donor could have decided not to do this at the very beginning," says Nan. "We wouldn't even have had to know that there'd been a match."
"We found a matching donor for Marc and turned it over to NMDP," says Life-Savers spokesperson Susan Rafkin. "We have no official or unofficial role after that point."
Two weeks later Marc had the autologous transplant. Under general anesthesia, a quart of Marc's marrow (one-seventh of the body's total supply) was extracted from his hip bones. After being treated with chemotherapy, the marrow was transfused back into his body through a catheter in his chest. After 40 days in the hospital and four more weeks as an outpatient, Marc returned home. On his last day in Seattle, he visited his old floor in the hospital. All the faces were new to him. The eight transplant patients with whom he had started out had all died.
In September, Marc celebrated his sixth month of remission, a watershed, according to Dr. Hansen. "Every day and every week that a relapse doesn't occur," he says, "is statistically to his benefit." Six months is also the minimum amount of time required for Marc to be eligible for another transplant, should a relapse occur. It's a prospect that haunts him. "Each week when I go for my blood test, my knees shake, and I say a little prayer," he says. "The greatest feeling you can have is when you walk out of that office because, for another week, you know you're okay."
Each week also brings another bit of normalcy to the Smiths' lives. These days Marc's routine is amazingly ordinary. He goes grocery shopping, shoots baskets with the boys and does legal work at home in preparation for joining a new firm this month. He and Nan are even making plans for Sammy's bar mitzvah in May.
Through it all, Marc remains acutely aware that he is one of the lucky ones. Every day, 25 Americans die of blood diseases like his and, he says, he has no idea why he is still here. Those closest to him credit his determination and innate obstinacy. "He just has this tough, fighting nature," says Nan, "but the kids are his No. 1 motivation."
Marc agrees. "Sometimes at night, I go into their rooms. I lie down with them in their beds and I look at them and I think, 'Right now, at this exact moment, I'm alive and I'm with them.' Life can really be something," he says. "And you do anything you can to hold on to it."
—Bonnie Johnson, Tina Johnson in Tarzana
The house at the top of Sleepy Hollow Lane in Tarzana, Calif., stands in stark contrast to the suburban splendor of its neighbors. Their lawns are carefully shorn, their shrubbery coiffed. But the front yard of this house is a bare plot of dirt. Inside, the scantily furnished rooms—their walls almost bare—feel cavernous.