Larry's Battle

I totally believed that Larry was going to survive his struggle with leukemia (AML). I still cannot fully grasp that he didn't. During his illness, Larry was in the process of becoming, becoming the person he wanted to be. He had had some hard knocks in his life, not the least of which was losing his father to gastro-esophageal cancer at the age of twenty. His relationship with his father was in transition at that time, and the unfinished aspects of it seemed to influence every important decision he made in later years. He was sorting through these issues during the many hours he lay on his hospital bed unable to do much else except to reflect or sleep. He was attempting to position himself, at least mentally, for the days after he was well again. His main concern was the welfare of his seven-year old daughter. But death has that way of leaving life uncompleted, and so it was for Larry.

Larry was one year and three weeks post-transplant (allogeneic) when we learned that he had relapsed. It was a Thursday afternoon. We sat in the waiting room with the lab results of his blood test on our laps, staring into space knowing that 6% blasts foretold the return of leukemia. We did not expect this. At least I didn't. This was the first report that indicated the presence of blast cells since his transplant. I thought that since he had made it past one year he was out of the woods. Wasn't he supposed to be?

When we were called by the team to see the doctor, we were led to an examining room where we waited for some additional time. We sat silently. Not even fidgeting. What could we say? Our eyes connected as did our hearts, dreading the meeting that was about to happen. I was holding tightly onto the hope that whatever was going on could be rectified.

The doctor and nurse entered together, unusual, as the nurse always preceded the doctor in past appointments to gather information. He asked Larry how he was. The nurse stood by Larry, silently, gently rubbing his shoulder. Larry answered that he was ‘medium', an expression he often used to cover the landscape, but added, ‘until I saw the lab report'. The doctor took Larry's comment as his cue and delved right into the seriousness of Larry's situation. He said that the report was very worrisome indeed and proceeded to outline steps to try to fight the returned leukemia. He was all-business and we appreciated that. We even were hopeful. At the close of his outline, however, he added, ‘And, if this doesn't work, we can consider using palliative methods [to keep Larry comfortable until the end']. He even added that if we hadn't considered last measures we should discuss that together too, and let him know our thoughts. That was just too much for each of us. We couldn't let go of our hope so quickly. The doctor's words felt like a whiplash. It was as if he were handing us a drink of futility. As important as it was to face reality, all of it at one time was simply too quick.

Later, I thought that the doctor, too, was probably very, very sad at the time, understandably so, as he had to deliver this talk on more occasions than he wished to. He knew well the risks and paper-thin possibilities that lay ahead. He was doing his best, but as much as I wanted to excuse him, I couldn't. Something was lost in his empathy during those crucial moments. We felt like we were run over by a Mack truck: his words kept coming without interruption or pause.

I wanted desperately for my son to live. I thought there might have been some mistake. Maybe someone mixed up the laboratory results. I knew also that this is a common response of a patient and/or family member. But at the time, I only could think that there had been a mistake. I asked if the blood test could be repeated. The doctor, gathering his lost empathy, agreed. Larry did not question the results; he thought they were accurate. He later told me that he had been feeling the same weakness he had prior to his initial diagnosis but hadn't assessed it correctly until he saw the lab results. He knew there was no mistake. And, there wasn't.

We returned to clinic on Monday for another blood test and a clinic visit. The blood test reported 27% blasts. The doctor removed his anti-rejection medications in the hope that the donor cells would fight the leukemia. Larry was now scared. He felt defenseless. He remembered his closest buddies from the transplantation unit died shortly after relapse. I felt a deep sense of helplessness. The following day, Larry woke with a fever and vomited his medications. Things were heating up. We went to the Clinic where his fever climbed even higher. The percentage of blasts increased exponentially. Larry was admitted to what became his last admission.

During that hospitalization of a week, I stayed by his side by day, and overnight his last four nights. Larry was deteriorating quickly. On Friday night we were talking, sharing thoughts and by Sunday, he needed oxygen and morphine for comfort. The attending physician, who was a noted specialist in leukemia, was respectful and answered my questions generously. He tried on more than one occasion to tell me that a relapse seldom had a good outcome. I could not absorb his message. He called me by phone the next evening to ask about my thoughts regarding end-of-life care. He did seem relieved when I said that my wish was for his comfort. He reassured me that this was the best decision I could make and that he would see to it that Larry had everything he needed in order to be comfortable.

A young doctor who knew Larry in an ancillary way came by twice to see him. A busy doctor, she had little time for a visit but on each occasion, was encouraging. During her first visit, she told him that he fought the leukemia once already and that he could do it again. The second visit was the evening before he died. She had not updated herself about his condition and met me near the nurses' station. Again, she was encouraging about medical possibilities, detailing what steps could be taken in his behalf. She meant well, certainly. But, her words were promising something that was by this time, beyond possibility. My son was dying in the room across from where we were standing, and she was telling me he could live! I listened to her in agony wanting to believe that she, by herself, could save him. Finally catching my wits, I insisted she come in to see Larry. She followed me into his room, sat beside his bed, looked overwhelmed as she took in the gravity of the situation and left a few minutes later, after hugging me. She cared about my son. We both liked her as well. She wanted him to live. But after she left, I sobbed, wishing something could be done to save my son.

The attending physician and his team spoke carefully with me about this incident, clarified my son's condition repeatedly, and helped me to regain my perspective; but they had a lot of work to do to make up for the poor judgment of this well-intentioned doctor who should have talked with Larry's team before speaking with me. I only hope that she learned something from her over-zealousness to keep someone else from experiencing unnecessary false reassurance.

Larry was fighting not only virulent leukemia but graft versus host disease (GVHD). GVHD, not a welcome side-effect of an allogeneic transplant, does fight remaining leukemia cells. But that didn't happen sufficiently and both the leukemia and the GVHD wiped out Larry's chances for survival. He had no resources left to fight the combined effects of AML and GVHD.

As I write this piece, my heart is ripped apart. I was privileged as his mom to be with Larry during his struggle with leukemia. It isn't often that a mother has a chance to get to know one of her children intimately as an adult. Larry showed enormous strength of character, he always faced reality, was disciplined about taking care of himself and caring for all those around him, and he never complained or pitied his plight in life. His health care team was committed and fastidious about his progress. Dedicated, special individuals. I ache from missing Larry as much as I do. I know I always will.