Children’s bodily boundaries when navigating cancer treatment
What does a two-year-old child know and feel about her own sick body before and after she is diagnosed with a blood cancer? What are the embodied and emotional consequences of cancer treatment? How do professionals help children navigate their treatments in a public hospital in Buenos Aires, Argentina?
These were the sparking questions that sent me into one year of multisited fieldwork (Marcus 1995, 2009) at the oldest pediatric public hospital in Argentina. I began my doctoral studies with the idea of investigating the physical, emotional, and psychological transformations that occur when children are diagnosed with, and treated for, a blood cancer. To do so, I followed, observed, interviewed, and spoke informally with seven palliative care specialists (including staff and residents), ten hematologists (including staff and fellows), eighteen specialists in communicable diseases (including staff, fellows, and residents), and more than one hundred children with their family members, from the point of diagnosis until children were considered cancer free or until, thankfully less frequently, they died. Outside the clinic, I also participated in weekly parents-only meetings at a national nonprofit organization supporting families with children with cancer. Parents would air their frustrations with, or acknowledge their gratitude towards, the medical professionals treating their children. Those with more experience would also pass on valuable information (such as shortcuts they had discovered to speed up paperwork, suggestions on how to avoid infections, etc.) and support those who were just beginning their medical journeys with their children. Most importantly, I observed and talked with children, from newborns up to eighteen years old, both inside and outside the clinics, who narrated to me their struggles with cancer treatment.
My dissertation examines how children negotiate, resist, and comply with the daily irruption of their bodily boundaries by cancer treatments. Theirs are bodies that work interactively with others while also being the object of urgent, invasive, and painful biomedical interventions. These traumatic interventions affect not only children but also their families and the professionals themselves. Procedures such as bone marrow aspirations breach children’s bodies boundaries to produce critical knowledge as well as essential therapeutic relationships. Thus, children become the embodied objects of cancer treatments.
Yet, children constantly resist the objectification of their bodies. They often do and say – and do not do and do not say – things in their own ways. Vindrola-Padros and Johnson (2014) helpfully draw attention to the way things may be ‘narrated’, ‘nonnarrated’, and ‘disnarrated’. In this case, it is up to caregivers, social scientists, and health professionals to listen for what events and people are included, excluded, and reimagined in children’s narratives of pediatric cancer treatments, and especially how they make sense of what is done to their bodies. Early on in my dissertation research, it became clear that I needed to examine how children attempted to regain control over their bodies and experiences. Children might cry, yell, or toss sarcastic comments at their medical residents, for example, or they might negotiate with a certain nurse to be pricked only in one arm. I quickly learned to focus on children’s microresistances as efforts to gain some control over their lives.
The following two vignettes show how children are ‘living with’ being the object of painful and invasive cancer treatments. I met Laura, a two-year-old girl with rare blood cancer, at the communicable diseases unit. She was going through the first cycle of chemotherapy. I noticed something strange. She had arranged her toys, blankets, stuffed animals, and her dad’s cellphone in a circle around her. Any time the resident and I, or any non-family member, opened the door, she said and waved ‘bye-bye’. Indeed, if doctors and residents tried to get inside the circle and touch Laura for routine check-ups or procedures, she would inevitably cry. It looked to me as if she was making a protective circle out of her belongings, and telling all of us ‘Leave me alone. Get the heck out of here’. Even within the chaotic and hectic world of hospitalizations, displacements, and disconnection from her mother and siblings, Laura was able to create some sort of order and try to protect herself from the suffering and unpredictability of medical treatments.
In another instance, Victor, a twelve-year-old boy in remission, told me that he would keep his Portacath (an under-the-skin, surgically implanted catheter) that he had used in his cancer treatment for two years, luckily without getting any infections. Victor declared with a smile, ‘I will show it to my own children. They’ll know what I went through’. Certainly, this medical device played a central role in his recovery. It was a gatekeeper that helped him speed up his cancer treatment by making his body hyperpermeable (easing the entry of blood transfusions and chemotherapy, and the exit of blood, cerebrospinal fluid, and bone marrow) while avoiding over-pricking his arms and the frequent infections that would have slowed down his progression. By taking his Portacath, now removed, home with him, Victor made an explicit connection between his porous body and his current self. He wanted to keep it as a reminder not only of the pain and suffering he went through but also, and more importantly, of the (un)controllable nature of his bodily boundaries.
Children and caregivers learn to live with the uncertainty of not knowing what is going to happen to children’s bodies next. When their bodies become permeable bodies, finding any way to exert some control over them may help create some sense of order in an otherwise chaotic experience. Laura and Victor attempted to make sense of the (un)controllability of their bodies and what was done to them, and they also sought to influence others while navigating cancer treatment, to negotiate their bodily boundaries as well as their (im)permeability. Laura sought to slow down or negotiate the breaching of her body, while Victor made the breach mean differently, by keeping a token of his past permeable self. Despite the fact that children’s bodies may urgently need to be permeated, children find ways to resist this permeation or to redefine the meaning of that permeability afterwards.
About the author
Rafael Wainer is a Doctor in Anthropology with a specialization in medical anthropology. He is currently Lecturer in the Departments of Sociology and of Anthropology at the University of British Columbia where he teaches courses in childhood and family studies, medical anthropology, and death and dying. His main research interests are children’s experience of cancer treatment, end-of-life and palliative care, medical assistance in dying, chronicity and disability, and resilience and hope.
Marcus, George E. 1995. ‘Ethnography in/of the World System: The emergence Of Multi-Sited Ethnography’. Annual Review of Anthropology 24 (1): 95–117. https://doi.org/10.1146/annurev.an.24.100195.000523.
Marcus, George E. 2009. ‘Multi-Sited Ethnography: Notes and Queries’. In Multi-sited Ethnography: Theory, Praxis, and Locality in Contemporary Research,editedby Mark-Anthony Falzon, 181–96. London: Routledge.
Vindrola-Padros, Cecilia, and Ginger A. Johnson. 2014. ‘The Narrated, Nonnarrated, and Disnarrated: Conceptual Tools for Analyzing Narratives in Health Services Research’. Qualitative Health Research 24 (11): 1603–1611. https://doi.org/10.1177/1049732314549019.