The treatments usually took place on Friday afternoon, and afterward Tana Collard’s three children would be in a stupor for most of the weekend.
Once a month Collard would drive her children—Monté, now 19, Carrie, now 15, and Travis, now 14—the 130 miles from their home in Victoria to the San Antonio office of Dr. Deborah Spiva. There the children would sit in recliners, intravenous lines inserted in their arms, and watch soap operas or stare at fish in the aquarium or doze while bottles of immunoglobulin dripped into their bodies for up to three hours.
The Collards first met Dr. Spiva in August 1984. They were living in the Rio Grande Valley, where Tana’s husband, John, was finishing his training as a laboratory technician. Earlier that summer Monté had begun suffering a series of inexplicable illnesses: sore throats, headaches, recurring boils. During one particularly severe episode, in which Monté had nearly intolerable headaches, John and Tana took him back to the family’s general practitioner, who recommended that Monté see a specialist in immune disorders: Dr. Spiva at Humana Hospital Metropolitan in San Antonio.
When Monté arrived at the hospital, Dr. Spiva, who headed the team handling the teenager’s case, admitted him to intensive care. To the Collards, she seemed to be a new type of physician—a woman bursting with confidence and command who also looked stylish and elegant. She impressed them with both her scientific knowledge and her warmth and caring.
The diagnosis was that Monté had a variety of ills: herpes zoster, oral candidiasis, and spinal meningitis. Dr. Spiva put him on a battery of drugs and in a little over a week discharged him. Tana and John couldn’t have been more grateful; they credited Dr. Spiva with saving their son’s life. For the Collards, Monté’s recovery would be the last good thing to happen for a long time.
In the course of her treatment of Monté, Dr. Spiva had discovered the cause of his susceptibility to infections: she said he was suffering from Job’s syndrome, an inherited disorder of the immune system. A diagnosis of Job’s syndrome is not a happy event. Victims, Dr. Spiva said, are vulnerable to the most common sorts of bacteria and are at risk for repeated, life-threatening infections. Because it is characterized by recurring boils, the disease takes its name from the unfortunate biblical character. So rare is Job’s syndrome that many medical reference books have no entry for it.
At a meeting with Monté and his parents, Dr. Spiva explained the gravity of the situation. “She looked me straight in the face and said, ‘It’s not the quantity of life, it’s the quality of life,’” Monté recalls. “I didn’t know what to feel. I was very shocked and very scared.”
Worse, after testing Carrie and Travis, Dr. Spiva found that they also had inherited the disease. Dr. Spiva told the Collards that if the children remained under her care, they could possibly live into their early twenties. After that, the doctor said, all the family could do was hope for a miracle.
The Collards had always been active, frequently taking family camping and skiing trips. But Dr. Spiva advised them that the slightest injury or infection could lead to death. The children began bathing two to three times a day in Betadine solution to prevent infection, and Tana regularly scrubbed down the house with bleach. Dr. Spiva had a special warning for sixteen-year-old Monté: she told him that sex could be fatal. “She said if I contracted a disease from a sexual experience, I could die shortly thereafter,” he remembers.
From the time of the diagnosis, the family was in shock. Because of the rarity of the disease, they couldn’t find anyone else who had been through it. Dr. Spiva became their sole source of information and comfort. Tana found that nothing could eliminate her growing despair, even after Dr. Spiva put her on fairly high doses of a powerful tranquilizer. One Friday afternoon, after the treatments had been going on for seven months, Tana put her three dazed children into the car, drove toward a bridge, and decided to go off it. At the last minute she put on the brakes. “I don’t know what stopped me. I got out of the car for a few minutes and just stood there. Then I got back in. The kids never said a word. I don’t know how I managed to get home,” she says.
The children were also confused and frightened. “I felt like who cares about school or anything, since we’re not going to make it to be anything,” says Travis, who cries at the recollection. “I really didn’t care about having friends or anything.” As the youngest, Travis was terrified of witnessing the death of his siblings.
In 1985 the family moved again, back to their native New Mexico, hoping that the clean air and water would help prolong the children’s lives. But during the fall of that year Monté’s health began to decline again. He was increasingly susceptible to boils and various fungal infections, and he couldn’t shake a perpetual lethargy. John Collard called Dr. Spiva. She told him Monté’s dose of immunoglobulin should be doubled. John and Tana conveyed the recommendation to Dr. Eugene Kippel, their pediatrician, who had been continuing Spiva’s treatments.
Dr. Kippel urged that the family see another immunologist first. The Collards agreed, and the children’s medical records were eventually sent to Dr. William T. Shearer, the chief of the departments of allergy and immunology at Texas Children’s Hospital in Houston. Shortly after Texas Children’s received the records, the staff contacted Tana and asked her to bring her family to Houston as soon as possible. “I thought, ‘My God, they’re really dying.’” Tana recalls.
Tana and the children flew there right after Christmas. The children spent the day having extensive tests done—the cost was almost $9000. Early the next morning Tana received a call at her hotel from Dr. Shearer, who asked her to