From both sides now: a parent-physician's view of parent-doctor relationships during pediatric cancer treatment.

Abstract

“I don't know how you handle this, being a pediatrician yourself.” I was surprised to hear this comment often from my medical colleagues as our 2-year-old son underwent treatment for Ewing's sarcoma. This essay offers a view of what it's like on the other side of the stethoscope, from my perspective as a physician and parent of a young child with cancer. When my son's cancer was diagnosed in 1993, I started keeping a journal. I hoped to share with other families1 and physicians what we have learned, both from our own experience and indirectly from those in similar situations, through various support groups, and from my own patients. My perspective is also shaped by the recent writings of several physicians,2-5parents,6,7 and patients8,9 recounting their experiences with serious illness and American medical care. I focus first on concerns that commonly arise for parents at the time of diagnosis, then on typical stressors and parents' responses during treatment, contrasting my own experiences from nonphysician parents. The conclusion suggests ways that primary care and specialty physicians can make such difficult ordeals for parents easier to bear, and hence, easier for their children. ### Case Report At age 7 months, G.L. developed a painless, transiently erythematous lump on his left third middle phalanx. Blood tests (complete blood count, erythrocyte sedimentation rate, and blood culture) were normal, and a radiograph showed a nonspecific small bone lucency. The lump grew gradually. At age 14 months, an open biopsy was performed, yielding a small, sterile tissue sample with equivocal pathology findings. A bone scan was normal. Twice over the next year, he developed fever and transient erythema of the lump, diagnosed as possible osteomyelitis and treated empirically with prolonged courses of oral antibiotics. Serial radiographs showed progressive cystic bone lucencies …