Sally's Dad
When the telephone rings at 1:00 in the morning, you know it's not to spread good news. But as my wife Jane and I woke up that night-†February 24, 1998-we had no idea how bad the news could be. Jane had taken our 12 year-old daughter Sally to the doctor that day. Sally had not felt well for weeks, and had complained of aches and pains. She couldn't sleep because her bones hurt; she would wake up crying. Her skin had blue patches and tiny red dots. Other doctor visits had not involved any blood work. That day Sally had had her first blood test, and then the phone rang."You must come to the emergency room of the Nashua hospital right away. Your daughter has a dangerously low blood count." Before she hung up the phone, Jane ran into Sally's room to check if she was all right. We were being told there was an emergency happening right down the hallway, and we needed to know how to act. Sally woke up and she looked OK. Our younger daughter Kathleen, 10 years old, was staying at a friend's house that night. Sally packed a quick bag and we three headed straight for the hospital.
Our first exposure to hospital care was friendly and cold at the same time. The examination room, filling out forms, the questions, the questions. Then they had to take more blood for tests. And that first IV ("Baby's first IV," that one picture you never want in the baby book). And the question...what was wrong with our Sally?
It's funny how even at this stage I broke the scene down into its components, and how I tried to protect myself and my family from the big truth by looking only at the little parts. I didn't know it at the time, but I would get really good at denial over the next year. I would become an expert at limiting the amount of information I could handle. My filtering system was on overdrive. I needed to find a way to handle the news later that week, when Sally was diagnosed with Acute Lymphocytic Leukemia (ALL).
Scenes from the early days of the Year:
After those first nightmare days, and through induction, we waited for the hospital treatments to get boring like the doctors promised. We like boring. Over time the routine set in, and the leukemia treatment protocol ran our lives: plodding through the first days of spring, running into summer, trudging into the fall of 1998. The hospital became our second home every 2-3 weeks. We came to know the doctors, the nurses, the DHMC hierarchy. Chemotherapy names and medical terms became second nature, the stuff of daily conversation. The induction-consolidation-maintenance program marked the cadence of our lives. Family and friends showed up at home and at the hospital to help, in no particular pattern or predictability.
During the early days with Sally in the hospital, I remember sitting on the couch at home alone one night thinking, "How am I going to find the inner strength to get through this?" I couldn't read the books on leukemia, because I didn't want to know about studies, statistics and probabilities. Odds are we shouldn't even be here, having a child with leukemia. Who cares about odds?
We felt that only a few family members and close friends really knew what we were going through. Kathleen had no patience for the people who gave Sally gifts, but did not include her in their giving (Jane and I shared that frustration). We tried to include Kathleen in everything, good and bad. But some of it was downright boring after the novelty wore off, and Kathleen rebelled at her exclusion as the center of attention. Jane talked through the hardest times, which was her way of sharing the hardship and airing out the doubt. A general sadness came over me at our girls-their early introduction to the random nature of events, and innocence lost. I mourned our loss of security as a family.
Jane and I developed sound bites in response to questions about Sally's condition: the 30 second version for casual inquiries, the extended bite for more serious discussion, and the long form when we just needed to talk. Some people took the opportunity to share their own family cancer stories. I wanted to hear only the good ones that featured hope and deliverance. Sally is now six months into maintenance. Those are still the stories I want to hear today.