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Permeable bodies : children, cancer, and biomedicine in Argentina Wainer, Rafael E. 2015

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PERMEABLE BODIES: CHILDREN, CANCER, AND BIOMEDICINE IN ARGENTINA     by      Rafael E Wainer      LIC., The University of Buenos Aires, 2003 M.A., The University of British Columbia, 2008     A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF   DOCTOR OF PHILOSOPHY   in   The Faculty of Graduate and Postdoctoral Studies (Anthropology)   THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)    December 2015 © Rafael E Wainer, 2015   ii Abstract The vast improvement in survival rates in childhood cancer, especially in childhood leukemia, has expanded expectations of survival. Surviving cancer is the result of invasive and life-disrupting treatments. To understand the long and taxing medical journeys of these children living with cancer this study traces children and families’ experiences at Hospital Infantil (public Children’s Hospital) in the City of Buenos Aires, Argentina. It examines how children and families as well as hematologists, communicable disease specialists, and palliativists struggle with the treatments and care for these children. This thesis asks: How does a “sick child” overcome a life-threatening illness such as a cancer and its painful treatments to become a “cancer survivor” living “life without illness” in the global south, particularly in a country like Argentina? This question leads to an anthropological reflection on the role of the body, especially children’s bodies, in cancer treatment, palliative care, and cure. It pays careful attention to issues of corporeality and subjectivity. The thesis examines how bodies work interactively while being the object of invasive and painful biomedical interventions. These interventions not only affect children but also their families and the professionals themselves.  This ethnography investigates the potentials and perils of pediatric cancer treatment in its specific Argentinean context and the importance of carefully looking at the body to understand children, families, and professionals’ practices that aim for a life without cancer. By focusing on the production of “permeable bodies” this study argues that cancer treatment turns children’s bodies into permeable bodies, bodies painfully turned inside out, as a way of producing knowledge and an urgent therapeutic relation that stretches in multiple dimensions. Children become the embodied objects of cancer treatment.     iii Preface Chapter 10 is a revised version of Wainer, Rafael. 2013. “The Dignity of Children: How to Evaluate Bodies’ (Im)Permeability.” Pp. 61–78 in Reframing Disability and Quality of Life, Social Indicators Research Series, edited by N. Warren and L. Manderson. Springer Netherlands. (http://link.springer.com/chapter/10.1007/978-94-007-3018-2_4).  The research design for this study was approved by UBC Behavioural Research Ethics Board (Certificate Number H09-02995) and by the Bioethics Board, the Research and Teaching Committee, and the Director of the Children’s Hospital in which I conducted fieldwork. It has also been approved by the head Psychologist in charge of the multi-families meeting and the Director of the NGO in which I conducted fieldwork.    iv Table of Contents  Abstract ..................................................................................................................................... ii	  Preface ...................................................................................................................................... iii	  Table of Contents ..................................................................................................................... iv	  List of Figures ........................................................................................................................... vi	  Acknowledgments .................................................................................................................. vii	  Dedication ................................................................................................................................. ix	  Chapter 1: “There is something strange in your child’s blood”: Setting the stage of the study ........................................................................................................................................... 1	  Research question ............................................................................................................... 8	  Ethnographic context: health care system, pediatric cancers, and medical travel ............ 13	  The Hospital Infantil ......................................................................................................... 26	  Overview of the dissertation ............................................................................................. 27	  Chapter 2: Theoretical framework ....................................................................................... 29	  Permeable bodies .............................................................................................................. 45	  Therapeutic process .......................................................................................................... 47	  Children ............................................................................................................................. 51	  Conclusion ........................................................................................................................ 52	  Chapter 3: Methodological issues .......................................................................................... 54	  Children ............................................................................................................................. 60	  Ethical considerations and methodological limitations .................................................... 62	  Ethnographic insights ........................................................................................................ 64	  Chapter 4: The beginning of a long medical journey: Passing through therapeutic thresholds ................................................................................................................................. 67	  “Social issues” .................................................................................................................. 76	  “Everything started with him getting very tired” .............................................................. 80	  Becoming a sick child: Hay algo raro en tu sangre (“Something is strange in your blood”) .............................................................................................................................. 83	  Finding the exact diagnosis takes time ............................................................................. 87	  Entering the Hospital Infantil ........................................................................................... 91	  Becoming a “Leukemia patient” ....................................................................................... 94	  Getting into the flow of procedures .................................................................................. 99	  Starting treatment and many hospitalizations… ............................................................. 101	  Phases of chemotherapy treatment .................................................................................. 103	  Therapeutic conclusions .................................................................................................. 109	  Chapter 5: Clinical setting: The context of hematological treatment .............................. 112	  The clinical setting .......................................................................................................... 113	  The Hematology Unit ..................................................................................................... 114	  The Communicable Diseases Unit .................................................................................. 136	  Four key moments during chemotherapy treatment ....................................................... 147	  Patients’ roles .................................................................................................................. 170	  Conclusions ..................................................................................................................... 171	  Chapter 6: Modulation: Children’s experiences from their bodies of chemotherapy ... 174	  Wiping células malas (“bad cells”) ................................................................................ 177	  Lived responses to treatment outcomes .......................................................................... 189	    v Phenomenological impact of illness / sickness experience on family ............................ 191	  Conclusions: Children’s whole lives are modulated ....................................................... 194	  Making sense of children’s bodies .................................................................................. 198	  What can a (medicalized) child’s body do? .................................................................... 199	  Corporealities/subjectivities ............................................................................................ 222	  Conclusion ...................................................................................................................... 238	  Chapter 8: Children’s inter-corporeal pain ....................................................................... 241	  The inter-corporeality of pain ......................................................................................... 246	  Assessing pain ................................................................................................................. 258	  Pain as an affect that obliterates meaning ....................................................................... 267	  Pain from illness and from treatment .............................................................................. 278	  A brief conclusion about children’s pain ........................................................................ 283	  Chapter 9: Therapeutic relatedness .................................................................................... 287	  Therapeutic relatedness: Filtering out “who is with you and who is not” ...................... 295	  The work of “therapeutic relatedness”: The burden of care ........................................... 298	  The ethics of “keep on fighting” ..................................................................................... 319	  Rearrangement, and transformations: Re-organizing the family at home ...................... 328	  Conclusions: Transformed family, redistribution of care, and new roles ....................... 331	  Chapter 10: Permeable bodies ............................................................................................. 333	  Breaking into the body .................................................................................................... 334	  Children with Leukemia ................................................................................................. 337	  The clinical gazes ............................................................................................................ 341	  Inter-subjectivity and extroversion ................................................................................. 345	  Professionals’ (im)permeability ...................................................................................... 349	  Family members’ (im)permeability ................................................................................ 351	  How can we talk about dignity? ...................................................................................... 352	  Conclusion: Dignity of life ............................................................................................. 354	  Chapter 11: Conclusions ...................................................................................................... 359	  References .............................................................................................................................. 374	    vi  List of Figures Figure 1: Argentina's map, CC. .................................................................................................... 14	  Figure 2: Hematopoiesis process by Mikael Häggström, CC. ...................................................... 72	      vii Acknowledgments  This thesis has many years in the making. I began transcribing interviews and analyzing data after finishing fieldwork on September 2010 and submitted the finalized version of the dissertation on September 2015. In the process of writing this dissertation I was fortunate to receive a lot of feedback from friends, colleagues, professors, and research participants. Here I want thank all the people that helped me to achieve this and to recognize those that supported me in countless ways.  I first need to thank all the participants of this study. I am grateful to children, parents and other family members, and to the different professionals that participated in this study and made it possible. Children, family members, and professionals taught me about their struggles, dreams, fears, and their abilities to work (not without frictions) towards the ultimate goal of overcoming cancer. I do hope this study makes justice to their own experiences and illuminate the immense difficulties children, parents, and professionals undergo during cancer treatment.   I would never have finished this study without the work of my supervisor, Dr. Bill McKellin, and my two committee members, Dr. Alejandra Bronfman and Dr. Gastón Gordillo. Bill was key to move this study forward and to shape it in this final form. I have been fortunate to work with Bill for both my MA and my PhD and I am always thankful to his capacity to be there when you need him. Whether I needed an official letter, or I had a problem during fieldwork, or last minute editing he was always there for me. Thanks Bill for your help throughout these years! Alejandra and Gastón were also vital to this project. During the lengthy writing process, I had the good fortune to exchange with Alejandra chapters of my dissertation and chapter of her new book project. My appreciation for her work and my recognition of her generosity kept growing while I was writing “head notes” that one day I will have to acknowledge her in this acknowledgements. Thanks Alejandra for all your generosity and your words of encouragement! Gastón was also important in this study. His knowledge of Argentina and his ability to connect with people and communicate ideas are inspiring. Gastón was very generous and provided me great feedback and edited big portions of my dissertation. Gracias Gastón por todo tu apoyo y el aguante durante estos años!   In all these years between Buenos Aires and Vancouver I was fortunate to meet great people, friends, mentors, and colleagues that were important not only for this project but also for enjoying my Vancouver years. In Vancouver, I am thankful to Ajay Parasram, Analia Gutierrez, Billy Flynn, Bonar Buffam, Chris Condin, Christina Moth, Colin Ferster, Dan Naidu, Dan Small, Dharashree Das, Dylan Gordon, Emily Birky, Fazeela Jiwa, Felice Wyndham, Hanna Cho, Iain McKechnie, Joanne Kienholz, Jon Beasley-Murray, Karen Garry, Lainie Schultz, Larry van der Est (and his parents), Marco Todesco, Marie-Eve Carrier-Moisan, Marlee McGuire, Martha Foschi (and Ricardo), Meghan Toal, Molly Malone, Natalia Bercovich, Natalie Baloy, Natasha Damiano Paterson, Ofelia Ros, Renisa Mawani, Richard Wayne McCombe, Rob Prey, Sandra Youssef, Sanjeev Routray, Sara Komarnisky, Sebastian Touza, Seonok Lee, Sherrie Dilley, Silja Hund, Solen Roth, Sungsook Lim, the late Susan Hicks, Tal Nitsan, Tamar VS McKee, and Thomas Kemple. In Buenos Aires, I am thankful to Beatriz Kalisnky, Cecilia Vindrola Padros, Juan Pedro Alonso, Maria Laura Requena, Mario Pecheny, all the medical residents at the Communicable Diseases Unit, and the professionals and volunteers at the Palliative Care Team.  Lastly, my sincere gratitude and indebtedness goes to my family. I could have never finished this without the immense support given by Ana Vivaldi: Muchas gracias por todo tu   viii aguante Ana! While in the midst of my fieldwork Ana got pregnant of our Franka and she was born in Vancouver in 2011. Then, in 2013 came Ramona and our joy expanded with these two beautiful human beings. I am thankful to the three for your love. I love you too. I am thankful to my parents Mario and Jasche and my brothers Fabio, Claudio, and Javier for everything.   This study was supported by several awards from the University of British Columbia, the Liu Institute at UBC, and a writing dissertation award given by the Department of Anthropology at UBC. I am also thankful to the Department of Sociology at UBC that allowed me to teach several courses in the last two years and to all my students.       ix Dedication                   To Ana Vivaldi, the best partner in life. To Franka Wainer Vivaldi and Ramona Wainer Vivaldi,  for all the mess, joy, and laughs.        1    Chapter 1: “There is something strange in your child’s blood”: Setting the stage of the study           To assist children and adolescents with the highest complexity. To become a reference center within a vast pediatric network by coordinating activities and services with other hospitals in an integrative and participative framework. The hospital will be, as always, focused on the patient’s and the community’s needs with a profile on assistance, teaching, and research.   Mission of the Hospital Infantil (as stated on its website, my translation) Valeria, a former cancer patient in her late twenties who had bone cancer as a child said on a cool July morning:  I remember when this woman [nurse] … who broke all my veins came [to introduce an IV for chemotherapy] and my mother told me ‘Bite me when it hurts.’ So I bit her, and I was biting, biting, biting because it hurt me. And when my mother moved her hand it was bleeding all over. She gave me her hand and told me “Bite me so I can feel what you feel.”    Valeria’s vivid story of pain, cancer, and the powerful emotions between a daughter and her mother reminds us of the intense, physical, and emotional impact of cancer treatment and the vast improvement in survival rates for childhood cancer in recent decades, especially for childhood leukemia. Expectations of survival have expanded despite the inherent invasiveness of treatment. Now, thanks to biomedical advancements, most children will endure treatment and survive cancer. Yet, we know little about the localized struggles and experiences of children living with cancer and going through intense and painful treatments. Also, we know little about the struggles of their families witnessing and participating in these painful clinical encounters. Furthermore, we have limited insight into the professional and institutional complexities of dealing with pediatric cancers.    2 This thesis asks: How does a “sick child” overcome a life-threatening illness such as a cancer de la sangre1 (“blood cancer”)? How does a child affect and is affected by a painful treatment to become a sobreviviente de cancer (“cancer survivor”) living una sobrevida sin enfermedad (“life without illness”) in the global south, particularly in a country like Argentina? This seemingly evident questions imply two contradictory processes. On the one hand, the professionals who deal with cancer treatment and care objectify children’s bodies by necessity in order to focus on wiping them of all malignant cells. They attempt to create a linear, teleological narrative from sickness to health. However, the children embody drastic and painful, personal and inter-personal, transformations in order to overcome illness. Thus, children’s bodies become the stage upon which these biomedical dramas are played out. This process entails a non-linear trajectory. The progression from a “sick” to a “healthy” child, from “patient” to “cancer survivor” is never unidirectional. When children are discovered to have algo raro en la sangre (“something strange in the blood”) they and their families are socialized into, and learn from, new relationships with doctors, nurses and other health professionals that will radically affect children’s corporeal existence and the lives of everyone around them. This relationship and the circuitous progression of treatment will go through countless convolutions, moving forward and backward between illness and treatment for an intense period of one to two years. In this context, children’s bodies become traversed by painful biomedical intensities, and these external forces constitute and permeate children’s bodies.   To understand these long and taxing medical journeys of treatment for enfermedad de la sangre (“sickness in the blood”), this study will trace children and families’ experiences at Hospital Infantil (“Children’s Hospital”) in Buenos Aires, Argentina. I will examine how                                                    1 Throughout this dissertation, I have decided to draw on numerous words and phrases in Spanish when it seemed that an English word was not adequate to explain a particular local meaning.   3 children and families experience these biomedical journeys, as well as how palliativists, hematologists, communicable disease specialists, nurses, and allied professionals struggle with caring for, and curing, these children. I will center my analysis on the body to think about the “very ‘stuff’ of subjectivity” (Grosz 1994:ix). The emphasis on the body in this study points to the need to examine several key issues central to the lived experience of cancer. What is the role of the body, especially children’s bodies, in cancer treatment, palliative care, or cure? How do the participants in care interact and influence one another? What is their focus? What are the various social and political forces that shape the interaction?  Four main themes will emerge, woven through stories of children, professionals, and families experiencing cancer. The first theme is that it is essential to focus on the body as the intersection of multiple positions. In order to understand these subjective positions, we need to center our analysis on the body. The notion of “permeable body” I am proposing here refers to the phenomenological, social, and political (medicalized) corporealized experience of cancer treatment (Scheper-Hughes and Lock 1987). By following Grosz’ (1994) model of corporeal experience I propose the notion of “permeable body” to grasp children’s corporeal experience of cancer treatment literally, symbolically, and metaphorically. While aiming at eliminating malignant cells in children’s bodies, their bodies are quickly transformed into biotechnological hubs at the centre of relationships among children, professionals, and family members. By doing so throughout treatment, children are painfully embodying both cancer and treatment with long-lasting consequences. Thus, children’s bodies become both the source and the target of the application of these biotechnologies, knowledge and expertise. Hence, the notion of “permeable body” throughout the dissertation will help us understand the place of the body (mostly children’s but also parents’ and clinicians’ bodies) in cancer treatment.    4  Second, children’s therapeutic processes have to be analyzed by looking at the transformed social landscapes– the hospital’s rooms and the hospital generally, as well as the homes, neighborhoods, schools, and workplaces of parents and siblings that both sustain and surround children’s experiences in this pediatric hospital. Sometimes children and parents are isolated from their families. While focusing on the interactions among children, parents, and physicians within the clinical setting, it is important to avoid losing sight of life outside the hospital. Thus, we will be able to examine the mutual influences between the clinic and the larger social landscapes beyond the clinic. For this particular argument, I will rely more heavily on more than 20 multi-family meetings I observed at an NGO that supports families with children with cancer.   Third, these biomedical journeys must also be seen as multidirectional diachronic processes that include a series of medically orchestrated “thresholds.” Every child and family’s journey is a bit different. They will experience a wide variety of obstacles and complications. Those experiencing cancer treatment often embody a blurred liminal state as they fluctuate between chronic and acute care. Given these different treatments, children seem to move from one liminality to another, and, thus, it makes sense to talk about “thresholds.” Although children, professionals and family members experience these “thresholds” differently, by paying attention to these spatial, affective, and temporal dimensions we can better understand patients’, family members’, and clinicians’ experiences during care.    Fourth, as the introductory vignette shows, these medically mediated interactions among children, clinicians, and families are constituted by, and embedded in, issues of pain. Indeed, one of the main concerns in this thesis is, how can parents and clinicians inflict pain on a child with the uncertain promise of survival? I will argue that pain unites the corporeal and the subjective   5 experiences of children, parents, and clinical staff. Therefore, we need to consider the frictions created between parents and clinicians in regards to who controls children’s bodies, what can be done to them, and how much pain children’s bodies will endure throughout lengthy treatments.   These four arguments point to an ethnographically informed reflection not only on the potentiality and perils of pediatric cancer treatment, but also on the importance of carefully looking at the body to understand children, families, and professionals’ struggles for a life without cancer. By focusing on the production of “permeable bodies” this dissertation aims to understand the radical transformations that are triggered within children’s bodies through lengthy treatments, and among children, clinicians, and parents from the moment a child is diagnosed until she is considered free of illness.   “Permeable bodies” in the context of this study has a specific meaning. It points towards a corporealized social relation constituted by the exteriorization of bodily elements that would normally remain folded to the inside the body for therapeutic reasons. I argue that the intersection of cancer treatment and children turns children’s bodies into permeable bodies, bodies turned inside out, as a way of producing a knowledge and an urgent therapeutic relation that stretches in multiple dimensions. Indeed, the continuous intervention into children’s bodies makes the interior (blood, bone marrow, tissues, etc.) into new exteriorities. They become new corporeal surfaces in Grosz’s (1994) terms, radically affecting the subjectivity of children. By focusing on the corporeal experience and by talking of permeable bodies this thesis is pinpointing the social relations created from the moment a medical resident punctures a child’s arm with a needle sitting on the lap of his parent, to the fear of the resident learning to make this procedure avoiding to prick herself, to the instance when a fellow carefully pricks an adolescent in between two lumbar vertebrae to test if she has leukemia, to the communication of a diagnosis   6 to the parents by a staff hematologist, the development of trust by parents and children on the efficacy of treatment, and the rearrangement of family around the therapeutic treatment of the child’s cancer.   Within modern medicine there is a long history of cancer treatment on children’s bodies that goes back (at least) to the 1950s and the discoveries by Sidney Farber and Yellapragada Subbarow that led to the creation of methotrexate, one of the first effective anti-cancer drugs still in use (Mukherjee 2010). As I will develop in the following chapters, these and more recent forms of therapy involve drastic and invasive procedures. The process of making children’s bodies permeable has complex personal and interpersonal impacts on children, family members, and clinicians.   While the concept of permeable bodies may suggest that children are reduced to passive bodies without agency or psyche in the everyday encounter among professionals, children, and caregivers, this is not the case. Also, I am not proposing that professionals only interact with children’s bodies; children and the people who treat them do care for them psychologically and socially. Focusing on children’s bodies does not eliminate children’s agency and personal identity. On the contrary, I would argue that these concrete medical processes have vast constitutive influences in children’s corporalitities and subjectivities. The notion of “permeable body” points precisely to the core of these clinical interactions revealing frictions, pain, agency, and resistance. We need to look at the corporeal experience of cancer in order to understand children’s, parents’, and clinicians’ subjectivities. Thus, we need to examine this more deeply to understand children as thinking agents acting together with other agents and objects. My point here is that by looking at children’s bodies we can understand subjectivity. I agree with Grosz (1994:vii) that: “All the effects of depth and interiority can be explained in terms of the   7 inscriptions and transformations of the subject’s corporeal surface.” Grosz’s remapping of the subject’s psyche or interior is an attempt to avoid reductionist and nondualist conceptualizations of the person. In her model, subjectivity is not produced as the interplay between surface/exterior and depth/interior but rather all the effects of depth are constituted by the corporeal subject’s surface. Everything that happens to children throughout cancer treatment (chemotherapy, biopsies, blood transfusions, bad news, temporal isolation, intense emotions, etc.) simultaneously affects their corporeal as well as subjective selves. Indeed, one of the findings of this study is that through lengthy cancer treatment children’s corporeal subjectivities are not only colonized by the actual physical interventions of biomedicine but also enhanced by multiple forms of biosociality that their care creates. Children living with cancer traverse long and intense processes of medicalized social interactions within the hospital that open them to new possibilities that create new layers of biosociality (Long, Hunter, and van der Geest 2008). These new biosocial relationships are progressively created among families, caregivers, and other families, as treatment provides an opportunity for caregivers and children to interact and cultivate different forms of intimacy, friendship, and camaraderie (even for short periods). Children, through painful treatments, discover and embody new bodily dispositions and capacities. Their child’s care changes parents’ (usually mothers) social relationships as they leave behind their households and are secluded at the Hospital Infantil for several months, separated from other family members. Within the hospital, they become part of the network of news, rumors, gossip, and tips among children and caregivers. Both children and parents are aware of what is happening to other children; if they miss an appointment, if they are doing fine, or getting worse. In many instances, I observed parents and children who kept going to the hospital even though they had been discharged just to support others because they already   8 experienced these struggles. In this way, other children, caregivers, and professionals became part of the world of the patients and caregivers.  In the following chapters, we will look at how children are engulfed within the clinical gaze and how their bodies became the focus of various interventions aiming to diagnose, treat, and free children’s bodies from malignant cells growing in their bodies. I will also compare the experiences of children, families, and professionals in this hospital in Argentina with similar processes in North America and Europe to show the particularities of this site. In the remainder of this chapter, I will describe the ethnographic context, the research questions, and the two main sites where I conducted research. First, we need to consider the research questions of this study.   Research question Originally, I intended to focus on children’s end-of-life experiences. Based on previous research in the hospital, the research questions I was hoping to answer were:  How does a healthy child become a terminally ill child? How do Argentine notions of childhood and medical interventions affect the social construction of the terminally ill child? And, how is the experience of these children medicalized?    However, when I began conducting fieldwork with the Equipo de Cuidados Paliativos (Palliative Care Team) I realized that we need to know more about the whole process, i.e. starting from the point that children get diagnosed and ending at the point that they either overcome the illness, or experience end of life. In particular, it became clear that it was important to grasp the complexities of the one to two years of treatment. Thus, I refocused my approach more heavily on the lengthy cancer treatments and less on the two different outcomes. For that   9 reason, I paid more attention to what happens during treatment, the rough path from the moments when a child gets diagnosed until professionals declare the end of treatment.   Consequently, in order to understand the complexities of the hematological treatment and its impact on children and families, I had to work with the two units dealing with cancer and the potential infectious diseases of these immuno-compromised patients. Thus, I contacted and received permission to conduct research at the Unidad de Hematología (Hematology Unit) and at the Unidad de Infectología (Communicable Diseases Unit). As part of my refocusing on the lengthy treatment, I also contacted the key NGO assisting children living with cancer and their families. The Fundación para Niños con Cancer (Children with Cancer Foundation) granted me permission to conduct fieldwork observing their weekly multi-family meetings. By working on these different sites, I became interested in children’s bodies as hubs of social, medical, familiar, and inter-personal processes. This led me to focus on permeability.   I wanted to understand how children’s bodies not only were physically, emotionally, and socially affected by these intense, painful, and invasive treatments but also how they were affecting others as well. I looked at children’s bodies as holey, fluctuating, constantly traversed by medically orchestrated affects. In this process, children’s bodies throughout cancer treatment became (re)assembled by means of an endless progression of in/out therapeutic exchanges aiming to wipe malignant cells from children’s bodies. In a sense, “permeability” has to do with the tangible flux of elements getting into/out of children’s bodies (drugs, blood, biopsies, needles, portacaths, etc.) but in a broader sense, it is also, what sustains the relationship between children-clinicians-parents: the promise of survival. In other words, children’s cancers and their treatments uniquely affect everyone. Becoming a cancer patient, a parent or caregiver, and a clinician aiming to cure and care children creates spaces of permeability, vulnerability, and trust.   10 Certainly, the advancement of cancer medicine has dramatically transformed pediatric experience of cancer and expanded expectations of survival. Many cancers now are less a life threatening condition and more a chronic life-long condition. Yet, in many ways, throughout the lengthy treatment the experience of cancer relates to both acute and chronic forms of care. Nonetheless, terminal care and the issues around failure of treatment remain as the backdrop of children’s, families’, and professionals’ experiences.  Every year in Argentina almost 500 new cases of pediatric leukemia are successfully treated if proper (aggressive) measures are taken.2 In 2008, the total mortality rate for all leukemias within the year of diagnosis was 15 % (ROHA 2008). The 3 year and 5 year survival rate for children with acute lymphoblastic leukemia (the more common type of pediatric leukemia) was 68 % and 63 % respectively; and the 3 year and 5 year survival rate for children with acute myeloid leukaemia was 40 % and 39 % (ROHA 2008:79). However, depending on the time of diagnosis, and the response to treatment, children will experience multiple complications and some of them may even die. These numbers show the intricate paths between cancer treatment efficacy and the experience of children enduring and surviving not only cancer but also its invasive treatment.  Given my desire to focus on the experience of childhood cancer and better understand the notion of “permeability” in this context, I reframed my research question to focus on the body of the child:   How is a child’s body (seen as a corporeal subjectivity) living with hematological cancer affected when invasive treatments are used to seek a “life without illness”?                                                    2 The incidence rates for children 15 and under in countries like Germany, Spain, Italy and US vary between 132 a 150 cases per million. According to the ROHA (2008) in Argentina every year approximately 1 270 children under 15 are diagnosed with cancer, an incidence rate of 124 per million.   11 This question is anthropologically significant in three ways. First, it points to the limits of our own body in the context of an intense and invasive medicalization of everyday life. Who has control over children’s bodies not only legally but also affectively? When looking at the way that others (mainly parents and clinicians) directly affect children living with cancer we understand their position of vulnerability despite their ability to act and affect others.   Second, it looks at the “stuff” that creates the subjective experience of cancer treatment not only in relation to children but also their parents and caregivers as well as their main sets of clinicians. The corporeal and subjective experience of cancer treatment implies an array of interventions and concessions around the boundaries of children’s bodies. By looking at these corporeal interventions we can understand children’s (and others’) subjectivities. Indeed, at the core of the inter-subjective relationships among children, parents, and several clinicians lies this constant compromise regarding the proper treatment of children’s bodies. There are conflicting ways in which children, parents, and clinicians describe and rationalize what children “are,” what they “have,” and what needs to be “done” to them.   Third, it directs our attention towards the drastic personal and interpersonal transformations that are dictated by the cancer treatment, and that I incorporate in the notion of “permeability.” The physically, emotionally, and socially charged therapeutic horizon that is associated with painful and invasive interventions into children’s bodies is an ongoing process that begins with diagnosis but continues even beyond the end of treatment. Throughout cancer treatment children are exposed to all sorts of intense experiences, ranging from pain to being secluded for weeks and months at a time. Indeed, what counts as “family” for children and their parents during these intense one to two years of treatment is also reconsidered. These drastic transformations affect children, parents, and their whole families.    12  The value of understanding children’s bodies as permeable is that we can focus on the frictions, pain, and resistance that are part of these invasive treatments. It adds a layer of complexity to our anthropological understanding of the body because in many ways what happens to children demonstrates that the body is less individual and more interconnected, dependable, and porous as it is traversed by biomedical forces. Parents, who give consent to clinicians to painfully intervene and breach children’s bodies for medical purposes, control those same bodies. Therefore, key tensions here are: To what extent do children understand these processes and have (or have not) the right to refuse these interventions? How often do clinicians let caregivers know about, and even be present during, invasive interventions? Caprotta et al. (2004) have shown that in the Argentine context the majority of clinicians let parents be present during minimally invasive procedures because parents can comfort children. Yet, they exclude parents during highly invasive procedures since it produces anxiety in clinicians and can be traumatic for parents. Throughout this study we will examine how this tension plays out in this particular clinical setting. For instance, we will see how parents support children through very invasive procedures such as lumbar punctures or bone marrow examinations. We will also pay attention to the struggles between parents, children, and clinicians around the decision to insert (or not) a semi-implantable catheter (portacath) inside children’s bodies. Indeed, the example of the portacath supports the claim that children’s bodies become permeable bodies. It also gives concreteness to the proposed concepts of corporeality/subjectivity and permeability in this study.  The therapeutic process must also be expanded beyond the clinical setting to understand how it is part of a broader social landscape of the child and family.  Their journey can last for about two years including the main part of treatment in the hospital and for more years after children are declared free of illness in their home communities. Children enduring cancer   13 treatments often have to navigate critical, chronic, and painful care. The goal of this thesis is to explore the therapeutic process shared by the children, their parents and family members, and the clinical staff, as seen in the treatment of children’s bodies, and in the focus of their concern, care, and action.   This study follows one strategy. Chapter 4 on “thresholds” identifies the beginning and initial phases of treatment, leaving the end of treatment for the end of the dissertation. In this way I organize this study around the sequence of events prior to and following the diagnosis of the hematological illness.   Ethnographic context: health care system, pediatric cancers, and medical travel  Argentina, the third largest country in Latin America, has a population of more than 41 million people, with 92.7% of them living in urban areas (see Fig. 1).3 More than a third of Argentina’s population lives in the Greater Buenos Aires metropolitan area that surrounds the City of Buenos Aires. The Argentine health care system, particularly tertiary care, is highly concentrated in the urban areas. According to the United Nations Development Report Argentina is ranked among the “Very High Human Development” countries and is ranked 49 among 187 countries (UNDP 2014). The WHO overall health system performance score situates Argentina at 75 of 191 countries, as compared with Canada (30), and U.S. (37) (Tandon et al. n.d.).4                                                     3 http://www.unicef.org/infobycountry/argentina_statistics.html; accessed 20150325. 4 http://www.who.int/healthinfo/paper30.pdf; accessed 20140321.   14  Figure 1: Argentina's map, CC.  Since the beginning of 1990s, under global and local neoliberal policies, most of Argentina’s people saw their socio-economic situations deteriorate. During the 1990s, Argentina became increasingly impoverished and unequal, with wider economic gaps between the higher, middle, and lower class (Destremau & Salama 2002). The last economic crisis between 1998 and 2002 (also called “Argentine great depression”) brought more inequality and poverty. The peak was reached in October 2002 when 57% of the total population was living under the poverty line5. Economic growth after 2003 and the development of redistribution policies targeting vulnerable populations helped to decrease poverty and inequality (Lustig et al. 2013). According to official statistics, poverty went from 54% in 2003 to 13% in 2009, and extreme-poverty from                                                    5 “Poverty headcount ratio at urban poverty line (% of urban population) | Data | Table”. Data.worldbank.org. Archived from the original on 30 October 2013. Accessed 20130422.   15 27% in 2003 to 3.5% in 2009.6 The last three governments in Argentina have prioritized desarrollo económico con inclusión social (“economic development with social inclusion”). Thus, social spending through various programs has vastly increased. For instance, the Asignación Universal por Hijo (“Universal Child Allowance”), which reaches approximately 3.7 million children and adolescents up to age 18, is a cash transfer that covers 9.3% of the population.7 Within this general socio-economic and political context, Argentina has a long tradition of accessible public health care at the primary, secondary, and tertiary level. The health care system is organized into three different sub-systems. The three sub-systems are 1) public healthcare that is funded through taxes, 2) social health insurance (labor union-sponsored plans) that are funded through an obligatory scheme by employees to their union, and 3) private healthcare insurance which is paid for by an individual. Within the public health care sector there are several programs such as Médicos de Cabecera (“family doctors”) that provide clinical care for public hospital inpatients and outpatients. A charge is made to outpatients for medicines and services. However, if they cannot afford to pay, the care is free. In 2007, about 40% of the total Argentine population were not member of any private or social health insurance scheme (Cavagnero et al. 2006)8. This sub-system is under constant threat from lack of funding and                                                    6 Argentina, Ministerio de Economía y Finanzas Públicas. Informe económico: cuarto trimestre 2010. Buenos Aires: Ministerio de Economía y Finanzas Públicas; 2010. Note: The National Statistics Agency (INDEC in Spanish) had a major credibility crisis due to Nestor Kirchner’s (President between 2003 and 2007) intervention. Now INDEC’s indexes are not reliable. 7 http://www.anses.gob.ar/asignaciln-universal/asignaciln-universal-hijo-144; accessed 20130624. 8 The actual figure of the population without medical coverage (private or social health insurance) varies depending on the sources. The World Bank estimates that 70% of the total population rely on the public sector (http://www.worldbank.org/en/country/argentina/overview#3; accessed 20150529).   16 understaffing. Care is also affected by constant labour strikes and disputes.9 The public sector was decentralized in the 1990s, with administration moving from the national level to provincial or municipal levels. At the same time, even though access to basic health services is universal in theory, with free access for uninsured people, “the implementation of (or increase in the number of) out-of-pocket payments for services [that] was introduced as a part of the [1990s] reform” have affected the levels of access to care to large sectors of the population (Cavagnero et al. 2006: 9). The main research site of this study is a pediatric hospital located in the public sector and with an enormous influence in the creation of pediatrics in Argentina. This is one of the main public pediatric institutions in Argentina in terms of its complexity and quality of care.      The second form of care is the Obras Sociales (Social Health Insurance, Labor union-sponsored plans), which are round 300 (200 are related to labor unions). These programs are administered by trade unions but are “flexible” and able to serve any client who is willing to join. Employers and employees each pay a fixed fee. This form of social security covers the cost of medical care and medicines in varying proportions. The patient pays the difference between the fixed fee and the actual cost of treatment. In the past, these union-run services have usually covered around 50-55% of the population. This percentage varies constantly according to a combination of factors such as the changes in unemployment (currently 7.5%),10 semi-employment, and under the table working conditions, and the growing inflation. Thus, in moments of economic crisis more people have to rely on the public sector as the only source of health provision. Within the Obras Sociales or social health insurance, there are three sub-                                                   9 See for instance: Anon. n.d. “Página/12: Ultimas Noticias: Un Paro Que Contagió a Todos Los Hospitales Porteños.” Retrieved April 14, 2015 (http://www.pagina12.com.ar/diario/ultimas/20-270492-2015-04-14.html). 10 data.worldbank.org/indicator/SL.UEM.TOTL.ZS; accessed 20150529.   17 systems: OSN (National Obras Sociales), OSP (Provincial Obras Sociales) and INSSJyP (special health insurance fund for the retired and their dependants).11 The third form of care is the private sector, which requires that patients meet the total cost of their medical care through private insurance. This sector includes around 5-15% of the population, or approximately 2 million people. More than 200 different national and international insurance companies provide coverage in this sector. These businesses are loosely regulated, which creates concerns about devious business practices. As a middle-income country Argentina’s medical infrastructure is unusual. For instance, it has more than 153,000 hospital beds, 121,000 physicians, and 37,000 dentists (population ratios similar to or even higher than developed countries).12 Argentina’s investment in health of 8% GDP is comparable with European countries.13 Historically, people have had high access to health care, which has resulted in morbidity and mortality rates comparable to developed countries in the global North. For example, the increased access to medical care has drastically reduced infant mortality rate from 25 per 1 000 live births in 1990 to 12 per 1 000 live births in 2009.14  The main research site of this dissertation is a public sector, tertiary level pediatric hospital that assists children from all over the country. As we will see later, many provinces send their patients who are complex to public hospitals like the Hospital Infantil. The main public                                                    11 Almost 4 million senior citizens (and their dependents) are covered by the INNSJP (also known as PAMI). 12 ESTADISTICAS VITALES – INFORMACION BASICA AÑO 2008. Ministry of Health (December 2009); http://www.deis.gov.ar/Publicaciones/Archivos/Serie5Nro52.pdf; accessed 20140412. 13 http://www.worldbank.org/en/country/argentina/overview#1. 14 ESTADISTICAS VITALES – INFORMACION BASICA AÑO 2008. Ministry of Health (December 2009); http://www.deis.gov.ar/Publicaciones/Archivos/Serie5Nro52.pdf; accessed 20140412.   18 institutions dealing with pediatric cancers are located in the biggest cities of Argentina such as Buenos Aires, Mendoza, and Cordoba. Although the pushing provinces who send patients cover the costs of treatment and relocation for their patients, this situation often creates pressure at the hospitals receiving the referrals in these major urban areas that need to deal with patients and families from all over the country. Another strain to the public system is that one in three Argentines lives in the Gran Buenos Aires (“Greater Buenos Aires Area”) that includes the City of Buenos Aires and the adjacent 24 Municipalities of the Province of Buenos Aires. In the area that surrounds the City of Buenos Aires the majority are working poor, with lower levels of education, above the average levels of unemployment or working under the table, and lack social benefits. The Province of Buenos Aires is short of beds for hospitalization, and the quality of its public hospitals in outlying areas with some exceptions is generally poor. Thus, inhabitants of the province go to the City of Buenos Aires where the quality is better. This creates another layer of pressure on the public health care sub-system at the City of Buenos Aires. In addition, half of the children under the age of four in the Province of Buenos Aires do not have any medical coverage. One out of every two children that come to the hospital is from the Greater Buenos Aires Area where children are often living in difficult conditions, which places considerable strain on the hospital’s resources. The Ministry of Health at the federal level supervises the three forms of the health care system and is in charge of regulations that ensure minimum standards of care. It is also responsible for evaluating and collecting statistics from the three sub-systems. Nevertheless, the national system of health services is inefficient and uneven. Each of the three forms of health coverage has their own system of insurance and health care provision. For example, the public sector has hospitals and clinics at the national, provincial, and municipal levels, offers primary,   19 secondary, and tertiary levels of care. Similarly, trade unions provide insurance and have their own hospitals and clinics. The private insurance system also has its own private clinics and hospitals. As we can see, there are overlaps but also gaps because many regions of the country have inadequate health care options.   Within the publicly funded system, both the municipal and national public pediatric hospitals in the City of Buenos Aires not only assist patients from the city but also attract patients from the densely populated surrounding Greater Buenos Aires Area and beyond. Included among the patients who arrive to the City of Buenos Aries for treatment are the hundreds of patients that every year generates 10 000 consultations for cancer at the Hospital Infantil in which this study took place (numbers from 2010).  Children’s cancers are complex and create demands on the Argentina’s public health care system that treats the majority of children living with cancer. In Argentina, the incidence of pediatric cancers is low, with a middle-to-high cancer incidence.15 Between 2000 and 2008 the incidence of pediatric cancers was about 124 for 1 000 000 per year in children under the age 15 (ROHA 2008), which is a slightly lower incidence rate than in Spain, Italy, Germany or U.S. The most common pediatric cancers in children under 15 in Argentina are leukemias (37%), Central Nervous System tumors (18%), and lymphomas (13%). Hematological conditions (leukemia and lymphomas) represent half of all the pediatric cancers (Moreno et al. 2013).16 Deaths within a month of diagnosis for all pediatric cancers show a decreasing trend. They were 5% in 2000 and 3% in 2008 (Moreno et al. 2013), although both mortality within a month and year of diagnosis                                                    15 http://www.msal.gov.ar/inc/index.php/acerca-del-cancer/estadisticas; accessed 20150325. 16 Similarly than in Argentina, among Canadian children, leukemia is the most commonly occurring type of cancer (33%), followed by brain and nervous system cancers (20%) and lymphomas (11%).  http://www.phac-aspc.gc.ca/cd-mc/cancer/fs-fi/cancer-child-enfant/index-eng.php; accessed 20140729.   20 is still relatively high in comparison to developed countries (ROHA 2008). Specifically, among patients with leukemias, in 2008, 15% of children died within one year of diagnosis, and this could be related to the characteristic aggressiveness of the tumor, the delay of diagnosis, and the problems of providing support to patients during the first phase of treatment, which generally requires high complexity care and a specialized professional team (ROHA 2008:21). Pediatric leukemias are the most predominant in terms of incidence (one out of three) among all pediatric cancers, and compose the largest cohort of this study.    Just to show the centrality of the public sector in relation to pediatric cancers, in Argentina, 80% of all children are treated in public hospitals such as the one in which I conducted fieldwork, and on average around 35% migrate to other institutions for some part of the treatment (ROHA 2008). As I will develop in more detail in Chapters 4 and 5, in the last decades, there has been a vast improvement in the treatment of pediatric cancers. Children have up to 80% (sometimes even more) of 5-year survival without illness in the developed countries, yet, in Argentina, overall 5-year survival without illness for pediatric cancers reaches 65%, although it greatly varies depending on the different regions.17 The other side of these percentages of survival without illness is that in spite of the outstanding progress in the treatment of pediatric cancers in the last decades still 20-30% or more of children living with cancer die of it or its complications. A number of different factors could explain the lower threshold of survival without illness in the Argentine context. We know that health inequalities are directly related with gradients of socioeconomic status (Black et al. 1980). Thus, social determinants of health have a major impact on how families with children living with cancer are able to mobilize myriad resources throughout the lengthy therapeutic process from diagnosis until survival                                                    17 SIVER/INC–Ministry of Health. Based on death certificates DEIS-Argentina, 2014   21 without illness. First, children in Argentina are often diagnosed later than in comparison with the developed world and, thus, experience more advanced tumors, which lowers the chances of overcoming the disease. Second, depending on the difficulty of each pediatric cancer, children (and families) access to effective therapeutic protocols and proper referrals are unequally concentrated in certain parts of the country.18 Third, they also need social support like the one given by CCF, especially during the first part of treatment (Moreno et al. 2013, ROHA 2008). One reason some children fall into the cracks of the health care system is that pediatric cancer treatment is highly centralized and heavily dependent on public health care. In 2008, the Registro Onco-Hematológico Argentino (Argentine Onco-Hematological Registry) recorded from the total population of children under age 15 that 74% were registered at tertiary level public hospitals, 16% at private institutions, and 10% by other sources (pathology services, death certificates, etc.) This shows the centrality of the public sector to assist all pediatric patients notwithstanding the kind of health coverage their families have. Moreover, only three public pediatric institutions treated more than 50% of all new pediatric cancers in Argentina (ROHA 2008) (including the institution where I conducted research). The particularity of the Argentine health care system is that public pediatric institutions play a fundamental role not only in assisting three out four pediatric patients but also in providing the expertise for the other two sectors. In fact, the great majority of the staff physicians (hematologists, communicable diseases specialists, and palliativists) and physicians doing the residency in Pediatrics (especially during third and fourth years) at the Hospital Infantil that I worked with during fieldwork work at both the private sector and the social health insurance as well. As I already mentioned the three                                                    18 Just to give a quick idea of the concentration of health services and resources in Argentina, the City of Buenos Aires and the Province of Buenos Aires together have half the total numbers of doctors and of beds available in the whole country (ROHA 2008).   22 sectors of the health care system run their own hospitals and clinics. Yet, children in the private sector are treated in that sector, and children from the public and social insurance sectors (especially provincial and municipals social plans) often end up treated at the public institutions. Moreover, given the Argentine’s socio-demographic patterns, many of the uninsured children that rely on the public sector live in the Greater Buenos Aires Area and are sent for care in the public pediatric hospitals in the City of Buenos Aires.   Argentina has a continuum of children with hematological conditions. On one side, there are those children who receive effective, up-to-date treatment in a few key central institutions who have a slightly lower five-year survival rate without illness than in the developed world. On the other side, many children only receive partial treatments or are never diagnosed and receive no treatment (Scopinaro and Casak 2002). Social and economic inequalities within the country prevent certain children and families for accessing good, reliable, and free hematological treatment. As I will show in Chapter 9, families will frequently need to travel and relocate to pursue good, reliable, and free treatment, which raises more layers of social, cultural, economic, and ethical issues (Vindrola-Padros 2012, 2015). Given the specificity of the required treatments and the concentrated nature of the medical system in Argentina, a large percentage of families go through taxing experiences of medical travel and medical relocation in order to seek and obtain treatment for their children. Thus, medical relocation, moving from one’s home to another location for treatment, is a common experience for patients and families. In Argentina, there are “core” and “peripheral” provinces in terms of their capacity to assist children with pediatric cancers. For instance, of the twenty-four provinces only three report less than 10% of medical travel for children with pediatric cancers. That is, only three provinces that do not push their children to other provinces   23 to receive treatment for their onco-hematological diseases. These provinces are the City of Buenos Aires (0%), Cordoba (4%) and Mendoza (7%). Thus, these provinces not only treat children from their own jurisdictions but also pull patients from the rest of the country (ROHA 2008). On the other end of the spectrum, two provinces (Santa Cruz and Tierra del Fuego both in the Patagonia region) send 100% of their children with pediatric cancers to other provinces for treatments (ROHA 2008). However, the majority of the provinces fall in between treating some of their children and sending others to one or more of the provinces that pull patients. Some provinces provide children with the first part of treatment and then send them to core provinces for the continuation of treatment. Although it should be noted that (from the Provincial State’s governmental logic) this kind of arrangement makes sense since the numbers of children with pediatric cancers are low and it is expensive to treat them. Thus, it is more cost-effective to send them to the more complex centers and help those families during their stay than to invest in having their own medical institutions in their provinces. Yet, given the high concentration of population in the center of the country, if we exclude the city of Buenos Aires and the Greater Buenos Aires metropolitan area only 30% of all medical relocalization related to pediatric cancers had to migrate to another province for some part of the treatment (ROHA 2008). In fact, according to Moreno et al. (2013), between 2000-08, 57% of children living with cancer were taken care of in institutions situated in their province of residence, in the City of Buenos Aires 37%, and 6% in hospitals located in provinces other than that of residence. This shows two things: that population in Argentina is highly concentrated in few areas with high density, and that medical relocation in many provinces is very prevalent although the number of cases in those “peripheral” provinces is relatively low. Of course, if we look this from the family’s perspective the story can be seen very differently. Most of the relocated families I talked with at   24 the Hospital Infantil would have preferred to be treated in their own provinces and not to be sent far away from their homes and social networks although they were thankful to the possibility of being treated in such a renowned clinical site (I will discuss this in more detail in Chapter 9).  Given the central role of hospitals within the biomedical system, and the great variability in local settings, one would assume many ethnographies have focused on hospital settings worldwide. Nevertheless, according to van der Geest and Finkler (2004:1995) within the rich history of medical anthropology research “less attention has been given to the hospital as the premier site of biomedicine cross-culturally.” Particularly, few ethnographic studies have focused on pediatric hospitals and children living with and beyond cancer. Bluebond-Langner (1978) was one of the first ethnographies that worked with children living and dying with cancer. Her main finding was that children from as early as three-year old knew they were dying but they had to engage in particular forms of communication with both their parents and clinical staff. Bluebond-Langner et al. (2007) have studied communicational and decision-making process (the reasoning and emotions) parents, physicians and often children engage in relation to children’s care, especially when cancer treatment is not working. They propose the need for an integrative care simultaneously focused on cancer, symptoms, and supportive care. Rindstedt (2013) conducted a video ethnography following five patients in their everyday clinical encounters to understand children’s coping strategies (imaginal coping). Children, parents, and staff were all involved in implicit and explicit ways of developing children’s coping with cancer. In these ethnographies, we can see the particular assemblage of specific actors (children, parents, and clinicians) and both the implicit and explicit ways they mutually affect one another.   25  If we look worldwide, even fewer ethnographies have concentrated on pediatric hospitals outside global north.19 This is remarkable given the importance society pays to vulnerable children as future-citizens needing help, and the vast influence pediatric hospitals produce at the social, familiar, and inter-personal levels in terms of practices, behaviors, and infusing new pedagogies and technologies of the self (Smith 2012).  In fact, when considering how societies take care of children, Sobo (2015) finds two different kinds of models: a pediatric model and a pedagogic model of childcare. A pediatric model focuses on “infant’s survival, physical growth, and health,” whereas a pedagogic model focuses on “behavioral development and preparation for educational interaction” (Sobo 2015:48). These models are related not only to child-rearing notions but also to larger ideas of social relationships too. In societies in which people are living in direr conditions a pediatric model focused on child’s survival would be emphasized whereas in “more developed” societies like U.S. a pedagogic model focused on development and education would be encouraged (Lareau 2011). In the context of this study, in Argentina it seems that we are dealing with a pediatric model aiming to assist children and families to overcome pediatric cancers in a broader social context of inequality and social struggle. In this thesis, I will look at children living with cancer in Argentina as traversing these two models of childcare. Their survival is dependent on access to health and reliable cancer treatments at key pediatric institutions such as the Hospital Infantil.                                                          19 Livinsgton (2012) is a great ethnography of a cancer ward in the global south, though it focuses on adult patients.   26 The Hospital Infantil  As one of the main tertiary care referral pediatric institutions within the Argentine health care system the Hospital Infantil covers a whole range of services, specialties and sub-specialties within pediatric medicine (from age zero to age eighteen). The mission of the hospital, as stated in its website, is:  To assist children and adolescents with the highest complexity. To become a reference center within a vast pediatric network by coordinating activities and services with other hospitals in an integrative and participative framework. The hospital will be, as always, focused on the patient and the community needs with a profile on assistance, teaching and research.20    The pediatric hospital in which this study is based is one of the most complex pediatric hospitals in the whole country with vast influences within and outside Argentina. This, however, does not mean it only covers complex conditions. Many patients with ‘simple’ conditions also receive primary care. Furthermore, healthy children are seen in “Healthy Child Clinic.” Where medical residents doing the basic residency rotation treat them. The Hospital Infantil has had an enormous influence not only in the development of pediatrics in Argentina but also in terms of expanding effective treatments for children living with cancer.   Throughout the dissertation, I will describe and analyze the complexities of the hospital, which was my main research site. I will also place the clinical site in relation to the greater landscape of care for children and families, including the Fundación para Niños con Cancer. This is one of the main NGOs helping children living with cancer. The Fundación para Niños con Cancer was the second institutional site for my fieldwork where I observed multi-family meetings. I will describe the Fundación para Niños con Cancer and these meetings in more detail in Chapter 9.                                                    20 I am not citing this Internet reference to protect the anonymity of the institution.    27    Overview of the dissertation  In Chapter 2, I will provide the theoretical framework of this study and place this dissertation within general discussions in anthropology and other disciplines about children’s and others’ bodies. More specifically, this chapter focuses on the centrality of children’s bodies living with cancer that are constituted in relationships among children, professionals, and families. In Chapter 3, I will discuss the methodological basis of this study. I will reflect on the different tools that I used for grasping the three sets of actors’ points of view at the Hospital Infantil and CCF. In Chapter 4, I will examine the different temporal, affective, and spatial junctures that children, professionals, and families traverse throughout treatment. Here, I discuss “threshold,” the process of entering into different aspects of treatment. These therapeutic thresholds are guided by the logics of treatment and are under the guidance of different key health professionals resulting in different relationships and experiences of children, professionals, and families. In Chapter 5, I will focus on the different phases of hematological treatment (induction, consolidation, maintenance) and how they intersect with treatments of hematological and communicable diseases when children need to be hospitalized. In Chapter 6, I will look at how cancer treatment transforms both the children’s bodies and the social relationships focused on the care of their bodies. I refer to this as “modulation.” In contrast to the hematological emphasis on chemically manipulating children’s bone marrow in a narrow sense, I argue that we can use the notion of “modulation” to look at how children’s whole lives (and those of caregivers) are transformed. In Chapter 7, I will pay special attention to children’s corporeality and subjectivity and how children’s bodies are placed at the center of cancer treatments. I employ several examples to show how different actors, including children, make sense of childhood and   28 children, what they “are” and what should be “done” to them. In this way, I claim that we are dealing with particular kinds of children’s bodies. In Chapter 8, I will examine the inter-personal nature of children’s pain and how these experiences of pain and suffering are both an affect that shutters meaning and a by-product of illness and treatment. In Chapter 9, I will investigate the impacts of hematological treatments on family dynamics. It focuses on “therapeutic relatedness” as family ties are rearranged during the therapeutic trajectory of the sick child. In Chapter 10, I will conclude by synthesizing many of the issues discussed in this dissertation by reflecting on “(im)permeability,” and how children’s (im)permeability (and others) is related to everyone’s dignity of life. In Chapter 11, I will bring to a close this dissertation by consolidating the main arguments of this dissertation. I reflect on how within children-professionals-families relationships children’s bodies became the focal points of bio-technologies and bio-knowledge applied in order to free children from illness but nevertheless experienced by children, professionals and families in different, frictional and contradictory ways.    29    Chapter 2: Theoretical framework   “Bodies are not inert; they function interactively and productively. They generate what is new, surprising, unpredictable.”  Elizabeth Grosz (1994:xi)  Over the last forty years, anthropologists and sociologists have renewed their interest in the human body by looking at embodiment (Csordas 1994), the medicalized body (Frank 1990), medical knowledge-making of the body (Good 1994), and the phenomenological, social, and political dimensions of the body (Scheper-Hughes and Lock 1987), among other issues. We live and suffer in this world as interconnected bodies. In the rich anthropological theorization of the body, embodiment, and subjectivity there is an increasing recognition of the interpersonal nature of social suffering and its capacity to remake the world (Kleinman, Lock, Das 1997; Das et al. 2001). This anthropological rethinking of/from the body is part of a long conversation that can be traced back (at least) to Marcel Mauss (1973). Mauss considered that all bodily expressions are learned, and, thus, he focused on physiological, psychological, and sociological aspects of the body. Mauss pointed out that “techniques of the body”, meaning actions such as walking or standing that occur before they are unconsciously assimilated or embodied, are highly developed body actions and sets of behaviors that embody aspects of a given culture. For Mauss, the body is constantly adapting through “a series of assembled actions, and assembled for the individual not by himself (sic) alone but by all his education, by the whole society to which he belongs, in the place he occupies in it” (1973:76). Mauss’ arguments about body’s reorganization by external forces, its constant adaptation, and the place it occupies in society are still theoretically relevant today when considering the role of children’s (and others’) bodies in cancer treatment. For instance, what are the “assembled actions” and the place of the body when looking at biomedical practices aimed at wiping malignant cells from children’s bodies? Which are the   30 embodied “techniques of the body” applied to, and learned by, children during the lengthy cancer treatment?   Within the recent discussions about the body three key dimensions stand out as pertinent to this study about the role of children’s (and others’) bodies during cancer treatment: 1) sociality, 2) medical normalization, and 3) power relationships. Those that focus on the first dimension are concerned with the body’s re-creation of sociality through practice (Bourdieu 1977, 1989; Butler 1993; Latour 2005). The cultural logic of biomedical practice produces particular forms of sociality, and in some cases biosociality when participants of the biomedical encounter (re)create social relationships based on biological conditions (see Rabinow 1996). Those that focus on the second dimension show how bodies become objects of medical normalization through a professional capture of countless aspects of everyday life (Conrad 2007; Cooper and Waldby 2014; Foucault 1994, 1979; Lock 1993). Those that focus on the third dimension pay attention not only to bodies as the targets of unequal power relationships but also to the capacities of bodies as sites of contestation to those same power relationships (Aretxaga 1997; Boddy 1989, 2007; Sharp 2000). From different perspectives, these authors helped me to consider how crucial is to understand power, sociality, and medicalization in the corporeal and subjective lives of children experiencing cancer treatment, their parents, and different health professionals. In fact, it is key to situate biomedical practices in relation to children’s bodies in particular contexts to understand the multidimensionality of the body in a broader sense. Current anthropological approaches to the body illustrate that we must not take the body for granted nor bracket it. Instead, we should attempt to understand bodily practices within wider interpersonal, social, and political contexts.   31 A fundamental issue within recent debates over the body that is worth rethinking is the legacy of Cartesian dualism (body/mind, nature/culture, thoughts/feelings), especially in the anthropological reconsideration of the body in relation to health and illness. In an influential article, Scheper-Hughes and Lock (1987) proposed the notion of “mindful body” to reconsider Western assumptions around the body and a highly individualized self. By looking at the three bodies (phenomenological, social, and political), Scheper-Hughes and Lock offered a roadmap to overcome the epistemological and political entrapment between mind and body, and to think about the role of the body in our modern corporeal existence even when, and in spite of, being colonized and biologicized by biomedical practices.  From a cultural phenomenological angle, Csordas (1994) proposed the notion of embodiment as the methodological template to remap our understanding of the body going through ritual healings. For Csordas (1994), religious practices such as glossolalia non-dualistically condense aspects of the body in relation to both perception (the body as object) and the cultural and social logic of practice (the body as subject). In another article, Csordas (2008) goes beyond individualized notions of the body to draw a direct connection between intersubjectivity (a concrete rather than abstract relationship between two material mental entities) and intercorporality (the primary experience of being always-already embodied in the interactions with other human and nonhuman bodies). For Csordas (2008:117), intercorporeality is a “mode of collective presence in the world.” In this study I consider the terms intercorporeality and intersubjectivity from a slightly different angle, and look at particular constitutive interactions such as transgressions of corporeal boundaries (Williams and Bendelow 2000) in order to grasp the space “in between” children’s painful bodies and others. I argue that both cancer and pain not only unite the corporeal and subjective aspects of the body, but also   32 situate and ligate individuals within broader social and cultural contexts, collectivizing children’s and others’ experiences. In this sense, I agree with Bendelow and Williams (1995) that we need to pay more attention to the emotional and cultural aspects of pain to transcend reductionist, dualistic, medico-psychological, and individualistic approaches to pain and suffering.  In order to think about intercorporeality and intersubjectivity we need to place these considerations within the expanding anthropological studies of subjectivity and the body. Yet, I am more interested in the relational modes of collective presence in the world, and how structural forces like biomedicine, in particular the construction of pediatric cancer patients, create inter-personal and inter-subjective collective experiences. Biehl, Good, and Kleinman (2007) suggest that subjectivity is both an empirical reality and an analytical category. Subjectivity is a dynamic and transforming process. In this sense subjectivity is always social, is always inter-subjectivity, and it is something we need to discover in our ethnographic explorations. Similarly, the resurgence of our interest in the body, on its corporeality and materiality, echoes Turner’s (1995:145) emphasis on the intrinsically social nature of the human body in “all its material, phenomenal, biological, psychological, social and cultural dimensions.” Certainly, there is an intimate connection between corporeality and subjectivity but the question is how much weight we give to these interconnected dimensions of the human body. Luhrmann (2006) put more emphasis on the emotional and psychological aspects in order to understand subjectivity. Using a Bourdieuian understanding of subjectivity, Ortner (2005) frames subjectivity within cultural practice and agency, and viewing power as central. Nonetheless, understanding subjectivity through a psychological model of emotion or through the cultural logic of practice we often lose sight of the inter-subjective and intercorporeal dimensions of the body. That is, the constitutive and relational aspects of bodies needs to be considered in order to   33 understand the corporeality and subjectivity of children, and others, as they become cancer patients. Therefore, we need to examine in more depth the connection between (inter)corporeal bodies and (inter)subjectivities. The experiences of children living with cancer and undergoing invasive treatment forces us to think about the body in non-dualistic terms, not only because they have a limited agency during the process and others are making transcendental decisions on their behalf; but also because the inextricably connection between emotional and rational, psychological and social aspects of the body. During children’s treatment, their bodies become the focal point of social interactions between children and their parents, between children and their clinicians, and even among parents, clinicians, medical residents, and nurses.  In order to understand the intercoporeality and intersubjectivity of children and others, I adopt Elizabeth Grosz’s (1994) philosophical and political analysis of corporeality to frame my investigation, especially her claim that bodies and minds are not different substances or two types of attributes of the same substance, but something in between these two options. Grosz’s project is a feminist reconfiguration of the body, for thinking about the materiality of the body, and attempting to overcome mind/body dualism. Grosz argues that there is urgent need to refocus on bodies in accounts of subjectivity. Subjectivity, for Grosz, should not be conceived in terms of depth or latency, but as a changing surface against the colonization of the body by biology and medicine: “Bodies are not inert; they function interactively and productively. They generate what is new, surprising, unpredictable” (1994:xi). For Grosz, bodies are not only actively participating in the world; there is also an irreducible dependence between the psychical interiority and corporeal exteriority of bodies with neither of the two predominating over the other. Grosz argues that constant movements by the subject can be seen as a Möbius strip with its psychical interior and corporeal exterior endlessly folding in out. Grosz (1994:xii) claims, “The   34 Möbius strip has the advantage of showing the inflection of mind into body and body into mind, the ways in which, through a kind of twisting or inversion, one side becomes another.” Indeed, these movements are the cores of what produces bodies. This constant inflection does not mean a new dualistic division between “body” and “mind” but the mutual dependency between corporeality and subjectivity.  The human body is, as Grosz (1994) says, always-already sexed, racialized, portrayed, and taught using stereotypical notions of gender and sexual division. Similarly, Emily Martin (1991) demonstrated this attribution of gendered behaviour to gametes in her analysis of biology textbooks. In my study, I also found certain assumptions about children’s bodies that become embedded in the medical practice. In Chapter 7, we will see how children (especially small children) are conceived as having the capacity to endure more, and be more permeable and malleable to, cancer treatment. If we consider Grosz’s approach when looking at children’s bodies, we can begin to rethink the role of the body’s involvement in biomedicine, clinical investigations and interventions, and especially in relation to the constant transgressions of corporeal limits. This enables us to focus on both the corporeal experiences and the subjective aspects of care, such as the psyche and spiritual care, which medical professionals generally disregard as beyond medical practice.  I decided to use Grosz’s Möbius strip model for two main reasons. First, it encompasses any differentiation between the corporeal (often seen as the exteriority of the body) and the subjective (often seen as the interiority or psychological aspects of the body). When looking at children’s bodies throughout cancer treatment, especially the painful interventions and the drastic transformations, we can see the inextricable relationship between corporeality and subjectivity. Second, it allows us to carefully look at these inflections between “interiorities” being   35 exteriorized and “exteriorities” being interiorized for medical purposes; which, according to Grosz, are the cores of what makes bodies. By looking at these social and medical processes I will be able to see the kinds of connections, disruptions, frictions, and negotiations that are established between children, parents, and key professional teams throughout the lengthy and taxing treatment.  One of the limitations of using Grosz’s analysis of “interiorities” and “exteriorities” in a medical anthropological study is that one risks falling again into a dualistic approach, as both concepts are new versions of “mind” and “body,” that are also disconnected from the social realm. Yet, the point here is to remind the reader of Grosz’s argument in regards to refocusing on the body in order to think of subjectivity as a changing surface engulfed under the different medical gazes. But perhaps the main limitation of using Grosz, which Grosz herself states in her conceptualization of the body, is the inability to account for the transformation and becoming of the bodies. Particularly important are the cumulative transformations that materialize when children’s bodies are systematically broken into. Biehl and Locke (2010) propose an anthropology of becoming to consider the preeminence of desire over power and to understand the irreducible and incomplete vitality of the actual lives of the participants we are working with. What actually happens when children’s bodies are becoming cancer patients? Rouse (2004) talks about the racially and religiously mediated relationship between children’s terminally ill bodies and (inter)subjectivity and how often parents and professionals compete in relation to how they signify and metaphoricize children’s bodies. Williams and Bendelow (2000) talk about “recalcitrant bodies” when looking at children living with cancer as active agents throughout treatment, in spite of the constant breaching of corporeal boundaries. Williams and Bendelow argue that children’s malignant bodies become simultaneously a resource and a constriction, a   36 frontier and a possibility.21 Precisely, it is in this biological and cultural co-construction of children’s bodies and in the corporeal transgression for medical reasons that we need to look at the material, cultural, physical, social, and emotional aspects of the body becoming a “Leukemia patient.” For this reason, it is important to think about children’s bodies along four axes: 1) physical body-biology, 2) social body, 3) medicalized body, and 4) permeable body.  The first axis is the physical body-biology, and it focuses on how biomedicine has a tendency to individualize and biologicize what happens between people (Scheper-Hughes and Lock 1987; Taussig 1980). Instead, many scholars have argued that biomedicine should do the opposite: de-individualize suffering and politicize pain (Greenhalgh 2001; Lock 1993; Throop 2010). The individualization of cancer and pain is increasingly problematic in this so-called “genomics era” (Guttmacher and Collins 2003) when the conventional view of nature/fixed vs. culture/malleable has been undermined (Fox Keller 2010). Now nature/biology can be split, reshaped, transmuted, replicated, reset, relocated, and commodified in unimaginable ways (Kaufman and Morgan 2005; Lock and Nguyen 2010; Martin 1994; Scheper-Hughes and Wacquant 2002; Rheinberger 2000; Sharp 2000). Scheper-Hughes and Lock (1987) have criticized the modern notion of individual subject and have shown how sickness is not a secluded event. For Scheper-Hughes and Lock (1987:38) sickness is a sign in a communication process where “nature, society and culture speak simultaneously.” Consequently, Scheper-Hughes and Lock argue, that the individual, biologicized body “should be seen as the most immediate, the proximate terrain where social truths and social contradictions are played out, as well as a locus of personal and social resistance, creativity and struggle” (1987:31).                                                    21 I will discuss later this dual process of constriction and enhancement.   37 In regards to the second axis, the social body, many scholars have already argued that the body is a primary mediator of social relationships, a hub of all sorts of connections (Deleuze and Guattari 1987; Frank 1990; Ingold 2011; Latour 2005; Turner 1994). Seen in this way medicalized bodies during treatment become the boundary objects (Star 2010) among the various clinicians and family members or the material anchors (Hutchins 2005) for a more political form of distributed cognition (Hutchins 2006). Given their short biographies, and compared to adult’s bodies, children’s bodies can be seen as an even more intense boundary object because there is less consensus among the different actors and because they are not highly structured. The body is also something we do in myriad (often unpredictable) ways, and is what we become (Biehl and Locke 2010), especially in the clinical encounter (Mol 2002). It is simultaneously subjective and objective, meaning and matter, personal and social, and can be the “‘material infrastructure’ of the production of selves, belonging, and identities” (von Walputte 2004:256). Yet, for a long time the body as the “material infrastructure” of social relations remained unproblematized in anthropology. Lock (1993:133) argued in the 1990s that researchers “‘bracketed’ it as a black box and set it aside.” In the last decades, however, the anthropology and sociology of the body have shown that the body is not simply given, it is something to discover (Frank 1990; Lock 1993; Martin 1994; Scheper-Hughes and Lock 1987). Indeed, if we focus on children’s bodies living with cancer and what has been medically done to them we need to remember what Bluebond-Langner (1978) was saying in 1970s: children are social actors in their own rights. As actors, they are aware from very early in life, what happens to them, even when they become sedated or terminal patients. Therefore, when considering children going through cancer treatment, we need to uncover the intrinsic relatedness of children’s bodies. Furthermore, we also need to understand the body as a focus for the social activity of others, e.g. various professional   38 and lay actors who surround children and participate in their relational construction during a foundational period of their childhood (see Silverman 2011). The actors surrounding children play a key role in the assembly of the experience of becoming a particular ill child receiving hematological treatments. Thus, we need to understand how children are suddenly introduced into a set of powerful forces in which their bodies will become new nodes within webs of multiple biomedical interventions (Waldby 2000).   This dissertation explores these forces and the ways children’s bodies not only become simultaneously subjected to social and medical regulation and intervention but also how they react to it. Children’s bodies are sites for enhancing possibilities and socialities. By focusing on this apparent inherent duality between constraints and enhancements, this thesis examines children’s intense experiences of procedures that produce pain, and cancer itself, as central nodes in the medicalization of social relations. I emphasize the simultaneous nature of these interactions in two ways: as constrictors and expanders of children’s lived experiences. It is a process that unfolds among children, professionals, and family, which is apprehended differently by each of these three sets of actors.   Cancer, like the pain that frequently accompanies it, is never an individual experience although it is embodied and lived in uniquely different ways. Children, professionals, or caregivers do not experience pediatric cancers or its after-effects in vacuum, detached from others (McGrath 2001; Woodgate 2006). As Livingston (2012:6) argues, “Understanding cancer as something that happens between people is critical to grasping its gravity.” To grasp how cancer happens “between people” we need to look at the interactions between children, clinicians, and parents interacting simultaneously at very different levels. Thus, I will locate this study within an intellectual tradition that aims to understand the social, medical, and intra-family   39 consequences of having a pediatric cancer and becoming a cancer patient (Bluebond-Langner 1978; Bluebond-Langner et al. 2007; Dixon-Woods et al. 2002; Jain 2013). By doing so, I will also look at the ways in which expert, practical knowledge is locally situated and negotiated in relation to lay, practical knowledge around cancer, what Kleinman (1988) describes as “explanatory models.”  In regards to the third axis, medicalization and normalization, when looking at the broad medical and social field of cancer the last sixty years have shown a global explosion of cancer research. With an increase in research on pediatric cancers, and the rapid rise in the effectiveness of cancer treatment for children, comes multiple layers of etiology(ies) that improve treatment options (Mukherjee 2010), and the complex social and interpersonal consequences and the meanings attached to treatment (Bell 2013; Jain 2013). When considering the vast clinical improvements in the last decades I also see a growing concern, both in the global north and south, not only over children’s quality of life during and after cancer treatment (Eiser 2004) but also over children’s agency, capacities, sexuality, and who makes decision for children (Bluebond-Langer et al. 2010, Woodgate 2006). This is consistent with Sobo’s (2015) notion of the move from children’s survival to quality of life.  This general concern over children’s wellbeing during cancer treatment plays out differently depending on each particular medical, historical, and social context. As we will see later in this chapter, and throughout the dissertation, the particular milieu of this study shows the uniqueness of the Argentine’s long history of public health services and the context in which quality of life is assessed. When we look at the national figures of years of survival without illness, we are also looking at the large social context that preclude, or promote, increasing rates of success with cancer treatment. The vast improvement in survival rates in childhood leukemia   40 (more than 80% 5-year survival in countries like Canada, around 65% in Argentina22; see Moreno et al. 2013) gives us a picture of these everyday struggles for survival. Considering the need to understand and improve children’s corporeal experiences with cancer it is surprising that relatively few ethnographic studies look at the ways in which children, cancer, and biomedicine are assembled in particular local contexts, especially outside North America and Europe (Vindrola Padros 2011).  Understanding children’s experience of cancer poses ethical, social, and practical concerns. Most communication with clinicians and treatment decisions are made by parents on behalf of the child. Socially, while children maintain a limited role as agents, they are in most interactions “patients,” recipients of care decided upon by their parents and doctors. In terms of anthropological research practice, it was difficult to me to ethically involve children in research while they undergo critical and medical medical procedures. Yet, as I will explain in the following chapter, I had to both observe and talk with children, parents, and professionals to also grasp the uneasy uncertainty and the fluidity of the encounters between those who are “producers” and “receptors” of the medicalization and normalization of children’s lives throughout cancer treatment. Indeed, central concerns of this thesis are: How do parents make care decisions, including authorizing invasive treatments that inflict pain on their child when in other circumstances their role is to protect their child? What are their understandings of the care provided and its impact on their child’s body? How do children literally put their body into cancer treatment; and how are they affected by it, understand it, and in turn affect parents and professionals? How do professionals manage their need for urgent, invasive, treatments without                                                    22 Depending on the medical jurisdictions and access to reliable and good quality health care.    41 losing sight each child’s corporeal and subjective experience of treatment and how they are affecting parents as well?   The individual and familial life-altering experience of becoming a paciente (“patient”) (which implies passivity, a recipient of care) brings to the forefront the rationalization and realization of this unpleasant paradox. There is the need to inflict pain today for the real possibility of providing cure, or reducing the progression of the disease. However, if the painful treatment is delayed or not intense enough to counter-act the progression of the disease the treatment may fail. During the course of the treatment and the medicalization of their lives, children’s bodies are constantly changing and developing mentally, emotionally, and physically. Thus, children, their families and medical residents and doctors must try to make sense of their constantly fluctuating worlds.   When looking at the inherent invasiveness of hematological treatments from different perspectives, children and family members raised questions about the appropriateness of interventions. Another paradox is present when looking at childhood cancers. On the one hand, children and family members are very often thankful to the professionals for the medical interventions that help their children overcome potentially life-threatening illnesses. On the other hand, there is often an unease among children, clinicians and parents over where to draw the line between urgently needed therapeutic interventions and children’s (and caregivers’) capacities to (re)act and make sense of these intrusions (Bluebond-Langner et al. 2010). Perhaps, one reason for the success of biomedicine, and especially cancer medicine, is that it is continually pushing the envelope both technologically and experientially (Keating and Cambrosio 2012). As Kaufman (2015) argues in regards to older patients, treatments that were once seen as extraordinary are now considered obligatory, and even mandatory (see also Muller and Koenig   42 1988). The various professionals whom I worked with in this Argentine clinical site were constantly looking for new national and international data and sought new research relevant to curing and caring for children.   Yet, pushing limits has costs. How do children, and their families, (re)act to the constant medical interventions, and life disruption, that children and parents say changes their lives so “life is never the same” (Woodgate 2006)? And, conversely, how do health professionals react to their endless need to intervene, and the invasiveness of their urgently needed medical interventions? Furthermore, how we can look at the frictions that occur between the structural context of care (availability of up-to-date cancer care) and the lived experiences of children, professionals, and families pursuing treatment? That is, how is the corporeality and subjectivity of everyone involved in this process being affected by pushing the limits of children’s bodies?  At a very basic level this study is about understanding the impact of the invasive medical interventions (and the medical and social imperative to intervene) on children’s lives, and participants’ assessments of the value of the interventions. Frank (1990:135) has posed a critical question in regards to the power of biomedicine to determine our everyday lives experiences, he asks, “How are our bodies ‘medicalized’ in the sense of our experience of them being conditioned by parameters which institutionalized medicine has set in place?” Everyone is indeed conditioned by these parameters (included professionals). Yet, the lives of children living with cancer and other disabled people are often constrained by biomedical forces. In fact, for Frank (1990:143), “The problem for the disabled is to redefine the parameters of experience according to their own embodiment.” This is also the problem for children experiencing “sickness of the blood.” I will also argue that by socializing children as targets of medical interventions, children’s lives are enhanced as well. However, a question we need to ask is: How   43 can children redefine the boundaries of their experiences from their own bodies, and how can caregivers and professionals be attuned to children’s intensively medicalized lived experiences?  The fourth axis look at the body relates to the notion proposed in this dissertation, that is, the “permeable body.” Permeability in its literal form refers to children’s corporeal experience of medical procedures and treatments. It relates to the individual, unique, lived, phenomenologically experienced body. Permeability in its symbolic dimension, is the notion that children’s bodies are “stuff to think of”, comparable to Scheper-Hughes and Lock’s social body. Permeability, a metaphor for the notion that children’s bodies are more penetrable and can endure more than other bodies, relates to the political body. If we consider biomedicalization and normalization as a form of surveillance and control of, and over, children’s bodies undergoing cancer treatment, then we have to pay attention to how the different bodies (of children, parents, professionals) become part of a political body (biomedicine). We need to understand how a political institution (pediatric hospital) that aims to erase malignant cells from children’s bodies then control these biologically driven clinical encounters. Yet, in these encounters, in these intense medical processes in which children’s bodies are constantly broken into, we can also see the frictions, resistance, and attempt to signify the permeability of children’s bodies. In the next section I will