John

John

"Barbara Mahler." I looked up to see Dr. Sullivan standing in the doorway on the other side of the waiting room. He was looking at me and I smiled as I got up and walked toward him. He turned and we walked down the hall to an empty exam room. As a nurse who had often worked with Dr Sullivan, I felt comfortable as we stepped into the small space. We sat down but I thought it strange that except for the two of us, the room was empty.

I had come to the clinic that morning with my seventeen-year-old, John. He'd spent a listless and lackluster weekend. John was not a child who complained, ever. It was also entirely out of character for him to be sick but there certainly was something wrong with him. Sunday afternoon, my husband Tony, who is also a nurse, and I decided that I would call the clinic in the morning and have a pediatrician look at him. "Kids, they're always overdoing," I thought. "Maybe he had mononucleosis or the flu."

Monday morning came and although I wanted John to stay home from school, he would have no part of it. He dressed, ate breakfast, and got on the school bus as on any other day. At 8:30 AM, I called the pediatric clinic to arrange for someone to see him: 10 AM, Dr Sullivan. "Good", I thought. I knew that he would do a good job. With some degree of annoyance, I called the school and arranged to pick up John at 9:30 AM for the ride to the clinic. I thought, "Why didn't he just stay home that morning?" Most children would jump at the chance to miss a day of school. Not John.

John loved school and his teachers loved having him there. He was an uncommonly bright and personable child. Academically and artistically gifted, he was no shrinking violet. He had interesting, additional information to add to class discussions and teachers frequently commented about his wealth of knowledge on nearly every topic. He had an extensive personal library and voracious reading habits. His memory was photographic.

Mr. Loveland was John's art teacher during his high-school years. He took a liking to John and recognized his artistic abilities. With Mr. Loveland's help and encouragement, John developed his skills along that line. John had a drawing desk set up in his bedroom and spent hours there creating pen-and-ink and pencil drawings of incredible detail and beauty. It seemed an uncommon discipline for one so young. I was amazed to observe the painstaking efforts that he put forth in the creation of perfect and richly intricate original artwork. Many pieces were whimsical in nature, others, realistic to a fault. Mr. Loveland arranged for a local exhibition of his work at one of the area libraries. John had made the decision to pursue a career as a medical illustrator and had contacted several schools that offered such a course.

John was six feet tall and had a well-proportioned physique. He was handsome of face and had a beautiful smile. Those years of regular trips to the orthodontist had paid big dividends. His thick sandy-blond hair complimented large, intelligent, green eyes. He was witty and had developed his own unique style. Tony and I were incredibly proud of the fine person that John had become and knew that he would make a worthwhile contribution to society in his lifetime.

All that changed on the morning of Monday, the Ides of March 1988.

Once in the exam room, Dr. Sullivan looked at me and calmly said, "We have the lab results back." There was a pregnant pause. . . . "John has acute leukemia." Suddenly, life jolted into ultra-slow motion. I blinked at him in stunned silence for a moment. The words and their import were burning their way into my consciousness. I said nothing. "So," he added nervously, "You probably suspected that."

No. I suspected no such thing. These things happen to others, not to me and mine. Acute Leukemia; the words hit me like a blast of super-heated air. I worked with trauma victims on a daily basis, not with cancer patients. I suddenly realized that the only thing I knew about leukemia was that it did not offer a good prognosis. I felt a wave of panic sweep over me and began to cry uncontrollably. "No!" "No!" I sobbed; "there must be a mistake, this cannot be happening." I felt like an animal trapped in that small room. Dr. Sullivan sat quietly and allowed the fury of my storm to subside somewhat.

When I had composed myself to a degree, he and I went to tell John. My son was an exceptionally perceptive child and despite my effort to conceal my feelings of disbelief and fear, he knew the instant that we stepped into his little cubicle that something awful was happening. At this point, I was grateful to have Dr Sullivan to lean on. He did the heavy lifting and told John what was wrong with his body. I made a phone call to Tony, who was at work in the intensive care unit. He was excused and came next door to the clinic to be with us.

One of the pediatric oncologists, Dr Theresa Silberman, saw John. The medical center in Marshfield, Wisconsin is a large place but the people who make it go are like family. Dr Silberman was clearly shaken as she did the bone marrow test and immediately following that, John, with Tony and me in tow, was moved to the pediatric ICU. We were told that because of the outrageous volume of white cells in his blood stream, she called it "sludge," he was at high risk for a stroke.

After several days of hydration, a regime of chemotherapy was begun and we waited patiently for the anticipated remission. Ten days later, the news was not good. Not only did the course of chemo fail to produce a remission, it didn't make a dent in the disease. The only significant change was that it had reduced a recently vibrant seventeen year old to a boy so weak that he was unable to walk the twelve feet to his hospital bathroom without the assistance of two. He was as pallid as the bed sheets upon which he lay.

That was the beginning of a nine-month ordeal for John, Tony, and me. Tony and I discussed how we could best support John through what seemed like it would be a long struggle. I would take a leave of absence and would be the person to remain at John's side. Tony would continue to work; as we needed his health insurance then as we had never needed it before. The cost of nine months of care came to more than half a million dollars. I wondered what the uninsured did under these circumstances. With John's lack of positive response to the first round of chemotherapy, Dr Silberman immediately recommended and arranged for John's transfer to the University of Minnesota Hospital system and the care of Dr Smith there.

In Minneapolis, Dr Smith and his team oversaw John's treatment. The ensuing months saw us buoyed by small successes only to be disappointed again. The emotional stress ravaged us all. Despite very aggressive therapy that included several harsh chemical regimens and an autologous bone marrow transplant, John only enjoyed a three-month remission.

He was able to return to school despite our wishes against it. For him, school represented normalcy. He once said, "Two weeks ago I would have loved to have a vacation, now I'd give anything to get back to school." He was so painfully thin by that point that just sitting on the wooden classroom chairs was an ordeal. He insisted that we make no special provisions for him. Our lives found some normalcy for the time until John's three-month post transplant check.

Once again, the disease had reared its ugly head. We had allowed John to make the decisions regarding his treatment. Dr Smith offered him an experimental therapy and although John said no to it at first, he later recanted and agreed to proceed. He was readmitted to the local hospital where the drugs were administered. They were extremely aggressive. The low counts that resulted were responsible for a raging septicemia: It was the beginning of the end for John.

And so, John quietly slipped away from us at 3:15 AM on the morning of January 6, 1989 at the age of 18 years; Tony at his left hand and I at his right. The road's last turn is the best.

John Carl Mahler
1970-1989
"One life—a little gleam of time between two eternities."
(Unknown)