When my husband, Tom, our son and I were first introduced to Memorial Sloan-Kettering Cancer Center in New York City, not knowing anything about the place, we entered the main lobby. We were impressed with the sumptuousness of our surroundings – the lavishness of the chandeliers, the plushy furniture, and the gilt framed portraits of the founders of the hospital. After registering we were given directions to the pediatric ward on the second floor in an older part of the building. We learned that this section was around the corner with its own less impressive lobby. A much larger, modern pediatric wing was in the process of being built.
Our son, David, 14 years old, had been diagnosed with leukemia at our localGlen CoveCommunityHospitalonLong Island. We felt very lucky to have Memorial accept him. This was the spring of 1973 and it was very difficult at that time to gain admittance to pediatric floor.
When we stepped off the elevator, what a shock to us. It was so strikingly different from our grand entrance of the main lobby. Our hearts fell as we looked around the dismal, drab, and dimly lit entry way, which was small with a cluttered nurses’ station immediately to our left and to our right, a dark wall with a public phone in the middle, Ahead and perpendicular to us was a long hall with rooms opening to the right and left.
As we were standing there, trying to acclimate ourselves to our new surroundings, a nurse went by pushing a young boy in a wheelchair. The boy, about 10 years old, had only one leg. When David saw him his face fell. He asked, “Am I going to lose a leg?” At this point we really didn’t know ourselves, but I said to him, “No, Davey, don’t worry. I’m sure you won’t, but we’ll talk to the doctor about that.”
Then a nurse came to direct us to David’s room where there were two beds. David did not have a roommate for the first few days. Once we had him settled in, I took him for a ride in his wheelchair to explore the hallway and the rooms, all on the windowed side of the building. The view was simply the roof of the first floor.
At one end of the hallway was a playroom with a television set and toys and games mostly appropriate for the younger children. There were a few books for older patients, and often, we learned later, special programs designed to entertain all ages. Outside the playroom at that end of the hall was a tall window overlooking a private elementary school. At the other end was a similar window overlooking a tree-lined street with an apartment house and an Irish pub, Gleason’s.
The restaurant and bar, Gleason’s, was a popular meeting place for hospital staff and the families of patients. There is where Tom and I had dinner most evenings so we could be close to the hospital. We rarely left David alone more than an hour. Noisy and busy as it was, it was the one place we could meet and discuss the day’s prognosis from the team of doctors who saw David daily.
As we became familiar with the second floor, we noticed that every once in a while we would catch a glimpse of a blue leatherette lounge chair in a patient’s room. It was always the same chair, actually more aquamarine in color, bright and gaudy, and quite shabby. We learned later that someone had brought it to the hospital privately and then just left it.
After a week or so at Sloan-Kettering Tom and I were summoned to a small office, and David’s attending physician, Dr. Grossman, informed us that David’s illness was more serious than was first thought. After all the testing, the doctors diagnosed him with a rare form of lymphosarcoma. When I asked if that meant he was going to die, Dr. Grossman said, “We never say die here. There is always hope.”
Those were the words we clung to in the following weeks while David went through aggressive chemotherapy and radiation treatments as bravely as any teenager could. Despite the pain he rarely complained even when he couldn’t eat even though he wanted to. He gradually lost more and more weight and became completely bed bound.
During this time we were vaguely aware of the blue chair being shifted from room to room, but Tom and I were too busy caring for David’s needs as best we could. Because conditions were so bad on the floor at that time, hospital regulations were relaxed allowing parents to spend as much time as possible with their children. The hospital was so short staffed the nurses were glad to have the parents’ help informing them when IV’s ran out and providing small comforts for the children and their roommates allowing the nurses more time to tend their medical needs.
David had one roommate among many, of whom he became particularly fond. Jonathan Most was a loveable five year old with a charming personality, quickly becoming a favorite of the nurses who teasingly called him “Mostly Jonathan.” Tom and I also fell under his spell and enjoyed his company as well as that of his parents who were with their only child almost as often as we were with David.
I spent almost all my time at David’s bedside, sitting on a straight back chair and sleeping with my head and shoulders resting on his bed. Tom relieved me when he could but he still had to work to pay doctors’ bills. We were more fortunate than many parents in that we were told that our hospital bills were covered by a grant because David’s cancer was so rare. It was also convenient for Tom to visit often since his office was in the city.
Then Jonathan was moved to a different room farther down the hall. These changes occurred frequently so roommates would not become too attached to each other. I continued to stop in for a few minutes each day to check on Jonathan whenever I could. One day when I popped in, his mother was sitting in the blue chair by his bedside.
David was going through a particularly difficult and painful stage at the time, so I had no opportunity to visit Jonathan for a day or two. When I asked the nurse checking David, how Jonathan was doing, she said looking at David with a smile, “Fine.” As she was leaving, she motioned me to follow her out into the hall. There, with tears in her eyes, she softly and gently told me that Jonathan had died that morning.
For us, things were looking up when David began to eat a little and seemed to be responding to his latest treatment. The one thing he had been longing for was to be able to go home to his golden retriever,Sandy, if only for a day. The doctors gave their permission, so we made plans to take him home, but the next day he had a relapse. When he recovered from that he contracted a staff infection which really set him back. The visit home was not to be.
Even though David had lost all his hair and was down from 110 to 58 pounds, Tom and I did not give up hope. We were sure he was going to beat the odds and make the medical books – until the day we walked into his room and saw waiting for us by his bedside, the blue chair.
By Marge Craig Petras Submitted by Susan C. Burke (w/permission)