The Art of Not Being a Difficult Parent
Authors: Ruth J. Webster
Journal: Journal of Clinical Oncology (2013)

DOI: 10.1200/JCO.2013.52.5246 When my 4-month-old son, Aidan, was diagnosed with a rhabdomyosarcoma at the base of his bladder, I immediately changed sides of the bed, from being the physician to being the parent of the patient. Because I had recently completed 4 years of junior physician training here in Australia, 2 years of which were spent in a hospice as a palliative care resident, I was uniquely positioned among the other parents of children with cancer, with an in-depth knowledge of how hospitals work. I remember one of my thoughts over the first few days after Aidan’s diagnosis was that I did not want to be a difficult parent, much the same as a difficult patient. We all know them—the ones who persistently interfere, question everything, are impatient, are demanding—the ones where you take a deep breath before you enter their room on your ward rounds. I wanted to be cooperative, to show that I understood the tensions and difficulties encountered in a hospital by physicians, nurses, therapists, and other ward staff. But quickly I realized that even more important were my roles of advocate, caregiver, and mum for my son, who was just a baby and not only could not comprehend anything that was happening to him, but also could not have any say in decisions that were being made about his life and well-being. I found that these essential roles were at times absolutely incompatible with not being a difficult parent. Aidan went through 9.5 months of treatment involving more than 7 months as an inpatient, including multiple cycles and lines of chemotherapy. He tolerated the initial treatment well. Unfortunately, the cancer tolerated it very well also, and we had to move on to second-line chemotherapy within 3 months. With the second-line treatment, he lost his hair, his platelets, his white cells, and his red cells, and he suffered multiple complications. But the chemotherapy was working, and so we persevered and experienced somewhat of a honeymoon period where the tumor shrank to half its size, and he seemed to be getting better. Unfortunately, that did not last; the tumor started growing again, and he passed away at 14 months of age. Over the 9.5 months of treatment that we experienced, I learned several things. First, Aidan needed me most of all to be a mother, not a physician. During the misery that he went through, he needed someone to hold him and to love him. He needed someone to pick him up at the end of every 30to 40-minute sleep cycle overnight while he was receiving treatment, someone to comfort him and try and get him back to sleep, someone to ring the nurses’ bell to ask for more antiemetics and more pain relief. Second, Aidan needed an advocate. Although we hadwonderfulconsultantswhomwetrustedwithAidan’s care and treatment, I knew all too well that in hospitals, mistakes happen, that things are inadvertently overlooked or forgotten. My husband and I knew Aidan and his medical history and treatment planbetterthananyoneelse,andIwantedtomakesure that anything that was under my control stayed under control. I monitored medication times and doses and notified the nursing staff if any were missed. I questioned the potassium infusion that was being set up when the consultant had specifically said that morning that Aidan did not require one. If someone wanted to take blood peripherally from his tiny, difficult veins, I reminded him or her that he had a central line. And through all this, I discovered that being a difficultparentwasgoingtobeinevitableattimes.After about 7 months of treatment, we had a meeting with the nursing unit manager of the ward where Aidan spent most of his time in hospital. My husband and I had three pages of items to discuss in this meeting. As I lookbackontheseitemsnow,mostwerefairlyminorif you took them in isolation from one another. But cumulatively, they made our prolonged hospital stays muchharderthantheyneededtobe.Duringthismeeting, I discovered that some of the nurses were scared of being assigned to Aidan and having to come into our room.Iwas initiallydiscouragedto learnthis,becauseI had genuinely attempted to be nice, courteous, and friendly to everyone. On further reflection, however, I started recalling the frustrations that had been experienced and the sense of helplessness over our inability to convey our personal needs as well as our son’s medical needs. The hardest thing that we went through during our whole experience was the utter fatigue and exhaustion. Hospitals are not set up to promote rest and sleep for patients or for parents of patients. In a short-term setting, this is not a major problem and can be survived until you are discharged. However, JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 31 NUMBER 32 NOVEMBER 1