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In the mid-1960s, Dr. James Holland built germ-free units, the so-called “Life Islands,” at the Roswell Park Cancer Center in Buffalo, New York. Chemotherapy patients would reside for several weeks, even months, in this protected environment, until their bodies became strong enough to protect themselves against infection.
As the promising clinical trials stretched remission periods from weeks to months to years, the issue became: What could put the entire procedure over the top? What could keep patients healthy enough that the steady rounds of chemotherapy and other treatments could be stopped altogether?
The original isolator unit at Roswell Park was simply a large plastic bubble inflated around a hospital bed, similar to what actor John Travolta endured in the movie The Boy in the Plastic Bubble and what was reprised in a more comic light by Jake Gyllenhaal in Bubble Boy 25 years later. But soon Holland had upgraded to a larger setup that Dr. Jerry Yates remembered was a germ-free room within a regular hospital room. The walls were made of plastic and the patient could draw curtains for privacy. Besides a bed, the germ-free unit had a table and chairs, a telephone, and a television. Purified air entered the room via a designated inlet and any visitors were required to be dressed in sterilized spacesuits.
The germ-free units were on the third floor at Roswell Park and soon included two-patient bedrooms, where those recovering from leukemia were separated by a curtain. Yates was the supervising physician and Audrey Tuttolomondo the head nurse. “I had been head nurse on a floor at Buffalo General when Holland and Roswell Park got the federal grant for the germ-free unit,” Tuttolomondo said. “In looking back on it, I was interested in a new challenge, starting something new. Also, I like working directly with doctors. They can be less picky than other nurses.”
Over a three-year period, 52 patients would stay in one of the germ-free units. They ranged in age from 17 to 73. From the beginning, the biggest question was how well patients could tolerate the isolation for stays of several weeks. Even though all patient beds were in view of the nurses’ desk and telephones were in all units, any objects entering the room, such as newspapers or books, needed to be sterilized. Food was passed into the units through a special door and patients didn’t notice any change in taste. It helped to have a sense of humor in such situations and one 17-year-old patient posted a sign that read “Don’t feed the animals.”
Questions soon arose: Could the isolators help with younger patients, like my younger brother Eric, and keep them safe from infection as their immune systems recovered from the toxicity of the chemotherapy treatments? (Vince DeVita, who was then the head of the Division of Cancer Treatment, had a 12-year-old son suffering from aplastic anemia, a condition in which the body stops producing enough blood cells. His son was housed in an isolator at the National Cancer Institute.)
In Buffalo, the doctors at Roswell Park initially held off, as they were amazed by how quickly the younger leukemia patients rebounded. “[Children] are extremely resilient compared with adults,” Yates said. “Unless they are severely ill, they are eating and playing normally even while getting chemotherapy. They don’t seem to know how sick they are unless someone tells them. Keeping them in the real world was important because that facilitated their coping with the illness.”
In addition, Dr. Jimmie Holland, Holland’s wife, noticed that something was missing with the older patients, the ones who lived for weeks at a time inside the isolator units.
To make something come alive, all of the sensory details—sight, sounds, smell, taste, and touch—need to be in play. Whether it’s a book, movie, memory, or moment, these five elements need to work in concert. Such components can elevate the everyday, even mundane, into something memorable, something to be treasured.
Patients in the isolation units were instructed to keep a diary, either through written entries or tape recordings. On the third and 21st days in the unit, patients answered a questionnaire, often asking them to select the statement that “most nearly describes your own feelings.”
In addition, nurses filled out questionnaires about the patients at the end of their eight-hour shifts. A 51-item checklist tracked such topics as behavior, anxiety, and discomfort on a five-point scale. In looking at the responses by patients and nurses, as well as interviews with several of the doctors, Jimmie Holland determined that the patients, even most of the nurses, missed the simple act of touch. As early as the third day inside the isolator, one-third of the patients said they really missed this aspect of care the most.
One patient wrote, “The lack of direct touch and contact with people you love has created disturbances.”
Another said, “You just feel you are all alone in the world and everything is cold and there is no warmth.”
The rest of the senses “were adequately stimulated,” Holland wrote in a report about the germ-free unit. “Patients were not bored in general. … [But] the unexpected and frequently expressed loss was human touch.”
Of the 52 patients who lived in the germ-free unit for several weeks, 15 had complete remissions and five had partial remissions. Twelve experienced no remission and 20 died while in the germ-free unit. In a subsequent report, Yates stated that the “failures to improve remission rate in patients with acute leukemia despite a reduction of infection has been disappointing.” That left the doctors in Buffalo still searching for a procedure, treatment, or particular medicine that would make remission more permanent, especially in their younger patients. Once again they were reminded they were working far out on the fringe of the known world.
“How cells interact with one another…” James Holland told me decades later, “why they misbehave and become a cancer. Why one tissue doesn’t respect the confines of its own designated place and invades another space. That’s still the mystery of cancer."
The leader of the Cancer Cowboys added that we have made significant progress in the last half-century, since attempts like the germ-free isolation units, but “we still don’t have all the answers. Not by far.”
