Characteristics of children with cancer
Both newspaper accounts and parental accounts offer commentary on children's experiences of cancer. In newspaper accounts, the subjective moods or perceptions of 21 of the 42 children with cancer were reported, in three cases by direct quotations from the children themselves, but in all other cases by adults associated with the child. Parents were the most common spokespeople (for 14 children), but sometimes other relatives spoke (four children), or other adults (five children), or journalists themselves (seven children) wrote about the child's subjective experiences. For newspapers, the focus is on the particular characteristics of children who have cancer. Children are presented as exceptional people who are an inspiration to others; in general, these accounts tended to idealise children's characters and their capacity for enduring suffering. For example, children are reported being brave or specially courageous (7 children) and cheerful and uncomplaining in the face of the terrible ordeal of their illness and treatment (8 children).
Her mom said, ‘Sarah gets up with a smile every day. She has always been a cheerful fighter. She really loves life and it shows’ (Dayton Daily News).
In newspaper accounts, the only negative emotions said to have been expressed by children with cancer concern two children who were reported to have cried before their deaths, but even then, there is a tendency to temper this with references to courage:
‘During this entire ordeal, he never complained’, Andre Penon said. ‘It wasn’t until the very end that he cried a little’ (News Tribune).
Despite the references to courage, the details of illness and its treatment are not described in newspaper accounts: the harrowing nature of the children's ordeal is instead suggested by the degree of ‘braveness’ that is required to face it.
Parents’ accounts, rather than emphasising bravery, were much more diverse in their representation of their children's experiences, very often taking a narrative form in which the plot was the events of the illness and its treatments, and the characters were those relevant to these events. Only one referred explicitly to their child being ‘brave’. Instead, parents’ accounts tended to focus on the notion of children habituating to, adjusting to and eventually accepting their illness and treatment, often after an initial period of protest and reluctance:
The tablets, they weren’t too bad, we had a few ups and downs at first but once she realised that she had to have the tablets she used to take them (Mother of female child aged 12).
Where parents’ accounts did suggest cheerfulness and stoicism, these seemed to be offered in order to serve specific strategic narrative functions in defending or protecting a child's identity. These kinds of representations seemed particularly likely to occur when parents were giving a summary of their child's experiences, rather than when they were offering detailed narratives about the events of the illness, and appeared to access conventional stereotypes about the idealised character of the child with cancer:
He plays football on Sundays; even when he was having his third block [of treatment] he played football. He’ll come up from a lumbar puncture on a Tuesday and go to football training (Mother of male child aged 9).
More generally, in describing the events of the illness, parents’ accounts tended to focus on the extreme difficulties of the illness and its treatment for children. Children, in the parents’ accounts, could be reluctant to comply with treatment, often resulting in traumatic efforts on the part of parents to secure co-operation. The treatment, frequently described in detail by parents, could cause considerable distress, anguish and pain for children, and was not always endured uncomplainingly:
[ … ] then she had a bad week then she went back in because she’d got all these pains and aches in her body and she couldn’t walk or anything. So she was taken downstairs in a wheelchair ‘cos [she] wouldn’t move, but we had to get her to walk, otherwise it would have been physiotherapy because she wouldn’t use her legs or anything. And she was just mardy [irritable] and miserable and really really radgy [complaining] and everything. I’ve been staying with her but had to come home for a break sometimes ‘cos we’d have a set to and upset her and I was upset and I could strangle her (Mother of female child aged 13).
The confusion, bewilderment and protests of children at being forced to undergo unpleasant and painful procedures was reported in 11 of the parents’ accounts.
The anaesthetics, because that used to really get him when he used to come back and he’d be upset all day (Mother of male child aged 5).
Parents were also at pains to emphasise the ‘moodiness’ of children over the course of the illness. They identified distinct phases of the illness and children's varying reactions to their own biography within the trajectory of treatment:
[ … ] she's been tired and obviously she's worried about her muscles because they’re thin, she's very conscious of her legs being really thin so you know that worries her. We were told to expect mood swings and all sorts but she's been very even. She has had times when she's been crying and a bit down but we haven’t had many [when] she's been well (Mother of female child aged 14).
The differences between newspaper and parental accounts of characteristics of children with cancer may to some extent be explained by cultural differences between the largely North American media reports and the exclusively British interviews. The bias towards optimism and achievement evident in the newspaper accounts may be attributable in part to more general cultural biases in this direction. However, the tendency to present children as stoical and heroic is not an exclusively North American one, and the circulation of this metaphor within the British cultural representations was evident in struggles found in the parents’ accounts. Parents were conscious of what they saw as the obligations imposed by prevailing stereotypes about children and serious illness, and in interviews they engage in forms of repair as they seek to reconcile the ‘reality’ of their experiences with the external expectations of their child's presentation and conduct.
The entitlements of childhood
A recurrent theme of the newspaper accounts is the threat that cancer represents to childhood, where childhood is defined principally by the entitlement of children to the category-bound activities of childhood. Category-bound activities are the activities taken to be appropriate, in a given society, for particular groupings of person (Silverman 1998): children are thus expected to enjoy childlike things. The newspaper accounts in our sample produce childhood as a time of life in which specific activities (sport, games, toys); entitlements (protection, innocence, love, education, the potential for future achievement); appearance (innocent, childish) and relationships (with parents, friends and family) are considered normal, healthy and desirable.
Children are commonly represented in the newspaper accounts as enjoying sport, including basketball, baseball, swimming, car racing and golf. The possession, enjoyment and grateful receptions of toys and other kinds of present were the next most common indicators of childish category-bound activity. With ‘normal’ childhood signalled by these means, sickness, and specifically cancer, was brought in by newspaper accounts as the destroyer of innocently enjoyed entitlements and activities:
It was a rare day this summer when Dora Rutter could keep 14-year-old Bradley inside. Her son's inline skates, dirt bike and fishing pole were his constant companions. But that changed in August when Bradley was diagnosed with Burkitt's lymphoma, a rare form of cancer. Since then, Bradley's days have passed either in a hospital or at home in bed. ‘Before all of this, he lived outside’, Rutter said. ‘It's hard on a kid, especially in the summer’ (St Petersburg Times).
Another common device was to cite educational and other achievements as evidence of future potential, which is, of course, a particular entitlement of children. The tragedy of the death of Steven Newkirk was given emphasis by the stress on how this disrupted his future, whose especial brightness was emphasised by his teachers:
‘He was a very bright child. He was one of those kids you could see a bright future for’, said Jane Kier, principal of Pritchett Elementary School in Buffalo Grove, which Steven attended. ‘He was charismatic. He was interested in things’. Steven went through kindergarten, first grade and second grade at Pritchett. His illness prevented him from starting the third grade this year. ‘Our whole staff, we’ve all known him. We’re all grieving together’, Kier said. ‘You hate to lose a kid, any kid, and Steven was a very special one’ (Chicago Daily Herald).
References to appearance were also used to indicate childishness, with children referred to in newspaper accounts as ‘cute’ or ‘chubby-faced’. The effect of cancer in threatening normal childlike or teenage appearance was emphasised: ‘chemotherapy has claimed his blond hair’ (St Petersburg Times). One child's appeal for those who raised money for his experimental treatment lay both in his appearance as a child and his pleasure in other category-bound activities:
[ … ] hundreds of Massachusetts residents weren’t about to extinguish hope. Not for an 11-year-old boy in cargo pants and basketball sneakers, who smiled and waved at the door of the plane taking him to his uncertain medical future. . . . His father says, ‘Here's a boy out riding his bike and doing magic tricks, and I’m not ready to see this end’ (Boston Globe).
Children were represented in the newspaper accounts as having the capacity to bring great joy, and childhood was depicted as a time of entitlement to parental love and support, friends and playmates. The mother of one child, Ulises Magana, was pictured as she ‘hugs her son’; another picture showed ‘hugs from his sister’ and yet another posed Ulises with his father (Ventura County Star).
Parents’ accounts also emphasised the disruption to the entitlements of childhood that cancer brought. Newspapers and parents, in stressing the threat to the entitlements to childhood that cancer represented, shared the common theme of loss: cancer meant loss of childhood, loss of innocence, and loss of a certain future. Like the newspaper accounts, parents spoke of the range of category-bound activities that their children enjoyed, including sport, dancing, music, and playing with toys and friends. Having cancer had undermined their children's ability to do many of these things, except in the institutional context of the hospital. Most parents spoke of the educational disruption associated with the treatment of cancer: children spent many months in hospital and missed normal schooling. Parents also emphasised, unlike the newspaper accounts, the disruption to friendships and the social relationships of the child associated with educational disruption. These meant that the restoration of entitlements such as education was not always free of difficulties for children:
And er initially she was very keen on going to this school because all her friends were going to the same school and she was very keen on being there and then initially she missed a few days because of going for her MRI scans and then she said she wasn’t ready she didn’t want to go, she just didn’t want to go, she was scared [ … ]. Initially she missed a lot and we had to go on a plan because she wouldn’t get up in the morning after promising the night before that she would go and normally she’d be having tears and she would have a tummy ache, sometimes I couldn’t tell if it was real tummy ache or just nerves because I started getting assertive and saying ‘look [ … ] you have to go to school’ and all these things and try to be as normal as possible (Mother of female child aged 11).
For many parents, the threat to the future that cancer represented, which was also identified in the newspaper accounts, was a very powerful one. One mother described the difficulties her son, though now cured of cancer, was experiencing in beginning his career. The stigma associated with the illness that she reports is notably absent from the newspaper accounts:
The only thing we are finding is I’ve contacted a few places for application forms for apprenticeships and they ask why he's still at school, obviously they presume behaviour problems. And when I’ve told them that has not been good, we’ve not had a good reaction, because obviously they’re thinking long term illness, and I say ‘no he's fine now’ you know, but they’ve sent the forms, they’re very polite – but you can sense from their voice (Mother of male aged 17).
For other parents, particularly those whose children are still being treated, the disruption of the future to which their child was entitled was even more pronounced because of the uncertainties about the outcome of the treatment. The illness forced a re-evaluation of the career of childhood:
I suppose for [husband] and myself, it's not knowing what will happen, not being able to predict in a way. I suppose that's kind of when you have children you know obviously you have a lot to say about, there's a loss of control there for us. Obviously what happens to [child], part of his care has to be in hospital with people who up until a few months ago were complete strangers unknown to us or to [child][ … ] but it just is the not knowing I think, the not knowing what will happen, whether [child] will become very ill and also having to come to terms with the fact that sort of five or six months ago we were worried about him having too much Calpol, now he's having drugs which neither of us can pronounce the names of or really know what effect they have on him [ … ] whether in the future he will be you know very poorly is sort of unknown and it was a bit of a baptism of fire for us to have a child suddenly in hospital seriously ill and in intensive care (Mother of male child aged 6).
In contrast with the emphasis of the long-term effects of cancer on children, newspaper reports on the whole do not describe life after cancer, instead focusing on the moment of triumph or despair when either child or disease is the victor. This kind of clear dichotomy between having the disease and vanquishing it is not found in the parents’ accounts, which recognise a more messy and overlapping series of stages in having, treatment, and coping with the aftermath of cancer.
Cancer clearly threatened childish appearance, as the newspapers had identified: parents reported on how the Hickman line (a special catheter used for giving treatments, routinely inserted in children with cancer) could influence children's identity, as could scarring, amputations and the effects of steroidal treatments. The most common threat to appearance was, of course, hair loss. This was often reported as being extremely difficult for children, though not all children or parents saw hair loss as the tragedy signalled by the newspaper accounts, and most eventually accepted it:
Oh she was very upset about it because her hair was very, very long, lovely thick hair and when her hair started falling out she really was very upset and when it all fell out she was so upset but she said well there's nothing I can do about it. But she really was upset about it she was always crying in the night and all and she kept saying ‘no men will like me, no one will like me, not without hair’. and I said ‘no [child] that's not right because it's not hair that's you, that's not you’ (Mother of female child aged 13).
She thought it [hair loss] was funny. She has been since, she says a few things like ‘I want my hair to grow back’ and she's really pleased it's coming back now and when it was coming [out] she just thought it was hilarious, she was coming up to me with handfuls of hair and I could have been in tears and she was laughing (Mother of female child aged 4).
Parents’ accounts also emphasised other entitlements of children that cancer had undermined which were not mentioned in the newspaper accounts. Nine parents stressed that children were entitled to fresh, healthy food, and often discussed at length their own role in providing this. Being in hospital meant a loss of control over food provision, with the result that children were denied their entitlements in this area unless parents asserted themselves:
It was awful, [child] didn’t like it at all. We used to take her down to the restaurant where she could choose her own food or I’d bring her up a salad or something or we’d go to McDonald's which she loves but she wouldn’t eat the ward food. It's all things like baked beans which she hates and chips. She did like the pizza there but that was about it. You see [child] likes vegetables and salads and they don’t really have those (Mother of female child aged 6).
Qualities and resources required in coping with childhood cancer
Newspaper accounts identified seven qualities or resources that were required in coping with childhood cancer: strength, courage, love, the help of God, ability to relish special moments, support of wider family and community, and access to specialist medical treatment. Some of these are illustrated in the following quotation:
To the family and friends of Katie, Nick, Andrea and Bobby, I say ‘never give up!’ Miracles happen every day. With the help of the Lord and modern technology, anything is possible! And spend as much time with them as you possibly can. Show them strength, hope and all the love you can each and every day, and relish the moments spent (Letter to the editor in the Press Journal, Vero Beach, Florida).
The efforts of wider family members were recruited in support of a range of functions, including care of siblings of the sick child. In no newspaper case was there shown to be any conflict in the relationship between the mother and father of the sick child over issues of support:
Jason and his family invite the public to share his passion for cars at the Island Dragway in Great Meadow, N.J., when ‘Mopar Day’ features a benefit drag race and car show to help defray the costs of Jason's leukemia treatments [ … ]‘I want Jason to have a nice day and hopefully we have a good crowd, especially for the people who put it together, to make it worth their time and effort,’ said Jason's mother, Diana. She is touched by the outpouring of love and support coming from coordinators of the event. ‘There are still some good people out there,’ Diana said. ‘That's one thing since Jason has been diagnosed; it made me look at people in a different light. It rekindles your faith in mankind (The Morning Call, Allentown).
While he is in the hospital, his mother and father have the use of an apartment that is one of many on a floor of the hospital that were refurbished for out-of-town families staying close to their sick children. While all this is going on, James Collins's father, Braden Collins, 71, lives with the family and takes care of year-old James and 13-year-old Jennifer. Zachary's grandfather and siblings soldier along at home, doing their chores and daily duties, worrying about Zachary (The Providence Journal-Bulletin).
The help of God was referred to in three of the newspaper accounts, all of them American, possibly reflecting cultural orientations towards the value of religion.
Access to specialist medical care was seen as a pre-requisite in coping with cancer in the newspaper accounts, although there was an emphasis on rare procedures such as bone marrow transplants (five children) and a report of experimental therapy for one child. It is interesting to note that bone marrow transplants are usually undertaken only for children who would otherwise die, and are a risky and uncertain procedure carried out on only one to two per cent of children with leukaemia. These accounts of very rare treatments occurred both in the British newspapers as well as the American newspapers in the sample.
The support of the wider community was widely reported in newspaper accounts, often focusing, particularly in the American newspapers, on the efforts of the community in fund-raising. These activities of the community were often reported as ‘rescue efforts’, which often surrounded the children with (newsworthy) special events and ceremonies whose effects were predictably positive and resulted in the continuation or restoration of category entitlements threatened by illness.
Teenager Eric Gilliland's passion for golf was such that it inspired the Orange county chapter of the Make-a-Wish foundation to get him a membership of a local golf club: the day got better when Gilliland was presented with bag after bag of golf shirts, balls, hats and tees. He even received a golf bag . . . ‘This is better than Christmas’ said Gilliland (Ventura County Star).
The newspaper-reported characteristics of strength, courage and love were certainly evident from the parents’ accounts as second order constructs, though none of the parents used these terms themselves to describe what was required to cope with their child's illness. This may reflect cultural differences in the use of these expressions, but is also likely to reflect the ways in which parents themselves give voice to their experiences compared with newspapers. None of the parents in our sample explicitly reported using prayer, possibly reflecting, as suggested earlier, cultural norms about religion. There was clear evidence that mothers assumed many of the caring responsibilities for their sick child, as we have previously reported (Young et al. 2002), and while many enjoyed complete support and shared responsibilities with the father of the sick child, several did not. Similarly, some mothers were well supported by neighbours, grandparents and friends, but those who were not felt it keenly:
Initially yes I had some support, my friends have been good but my family's all in London so they visit when they can really, and my mother-in-law's quite old. Initially she used to cook food for us, it was very helpful but now we just sort of deal with it by ourselves. It is hard, it's very stressful because also the little one has to be fed and taken to school and all that has to be fitted in, the normal day-to-day running of the home has to carry on, paying bills and stuff that has to be carried on (Mother of female child aged 11).
Many parents also described help from the wider community, including from teachers, but there were fewer references to fund-raising, as would be expected in accounts from parents whose children were being cared for in the National Health Service.
Access to specialist medical treatment was identified by parents’ accounts as a key resource in restoring their child, as it was in the newspaper accounts. There was, however, very little emphasis on experimental procedures or on bone-marrow transplants in the parents’ accounts; instead, parents were likely to see the treatments as routine, with only one account reporting difficulties concerned with their child's entry to a clinical trial. In this case, the father was opposed to ‘experimental’ treatment, rather than seeking it.
Effects of childhood cancer on parents and siblings
Six closely-related effects of childhood cancer on parents could be identified from the newspaper accounts: the obligation of proximity, financial burden, loss of employment, sacrifice, grief and emotional distress. The obligation of proximity, reported in six of the newspaper cases, is the requirement that at least one parent of a child with cancer be physically close to the sick child at all times. Financial burdens can accrue to families because of this obligation, which may cause loss of employment and, in the USA, loss of access to medical insurance, as well as involving other forms of sacrifice:
Because of all that is involved in Tori's situation, the Pentons have lost their battle to make ends meet. Until recently, Tori was not able to have the normal childhood immunizations because her immune system was so compromised due to her treatments, and could not attend any child care facility. Because of her numerous medical appointments in Chicago, it has been impossible for both her parents to keep full-time jobs. Consequently, they became reliant on credit cards just to stay afloat and provide for all their children, and are in overwhelming debt as a result (Chicago Daily Herald).
Grief was a reaction to childhood illness in newspaper accounts in relation to the six children in the reports who died, but also appeared to be a reaction to the other losses of the entitlements of childhood experienced by families where a child had cancer. Emotional distress was a taken-for-granted parental reaction to childhood cancer, and was signalled by descriptors of parents such as looking ‘haggard’. Siblings were reported in the newspaper accounts mainly as being supportive and loving towards the sick child, and as donors of bone marrow, with only one account hinting at difficulties for siblings.
All of the effects that were reported in the newspapers were also evident in the parents’ accounts. The obligation of proximity was particularly prominent, occurring in every account given, as was the reaction of grief. Parents clearly experienced considerable difficulties in fulfilling the obligation of proximity, which often involved discomfort, distress, and costs for themselves, but appeared to be keen to assert the adequacy of their parenting by under-emphasising the significance of these effects on themselves:
Sleeping on the ward is no big deal, if it's your child. In my opinion they are your foremost priority. I would have stood up all night. Obviously initially you go into a cubicle and you have a certain amount of privacy because it's like a grief you have to go through at first. It's a grief for former life where you were sort of carefree, you had four healthy children, everything was pretty much progressing as you hoped and one day everything changes and you feel like losing a child (Mother of male child aged 9).
Many parents suffered in their relationships through fulfilling the obligation of proximity: some experienced difficulties with their partners; others experienced very considerable guilt and distress at their inability to care for their other children. Most mothers had to give up their own employment altogether or take very lengthy leave of absence, and they experienced financial hardship as a result: one woman, for example, described how her husband left and she had to move to a smaller house. The emotional distress experienced by parents is much more explicit in their own accounts compared with newspaper accounts: they describe in detail fear, anger, crying, guilt and conflict.
Other effects on parents that are not described in the newspaper accounts have been described earlier (Young et al. 2002). These include the emotional labour and range of caring tasks that become an obligation for parents. Parents were often involved in the demanding business of either administering or securing their child's co-operation with treatment, in managing communication with the child, in decision-making, and in acting as advocates for their child.
Siblings in the parents’ accounts were not necessarily as accepting and supportive as they were reported to be in the newspaper accounts. Parents described how arrangements had to be made for looking after siblings of the sick child involving neighbours, friends and relatives. The forced separation from the parent (usually the mother), together with the special attention given to the sick child, could provoke resentment and anger among siblings:
J. used to get very jealous ‘why is [child] getting more attention than what I am, why is he getting more toys and presents?’ because a lot of people used to come and visit and bring presents and cards. ‘Why is he getting all that and why am I not getting anything?’ (Mother of male child aged 5).
Cancer as struggle
Childhood cancer was represented in the newspaper accounts as a struggle, often dramatised as a struggle between good and evil. The struggle involved (primarily) a struggle against death. The underlying drama was the issue of which force would win: the evil cancer or the innocent child. The drama of searches to find bone marrow donors before a child died was used in the accounts as a particularly exciting way to present this tension:
‘We’ve been to hell and back countless times, hoping and praying the right donor would come along before it was too late’ said grandmother Teresa Dwyer (Belfast Newsletter).
As in all good fairy tales (Langer 1998, Propp 1968), heroes must overcome obstacles in spite of villains and with the help of friends. The forces of good gather around the heroic child who has innocently been made to suffer:
‘I love you, angel’, Maklezow said to his sick granddaughter, Autumn Jensen, just before leaving. The five-year-old girl, partially paralysed from cancer treatments, was carried to the beach by her mother, Katrina Jensen, who is Viktor Maklezow's daughter and Erik's sister (Milwaukee Journal Sentinel).
The villains of the newspaper accounts were commonly obstructive health care bureaucrats. The parents of one child:
remain angry at Massachusetts officials who they say cost David precious weeks in his fight for life … ‘They cost us some time’, [his father] said of the state officials. He said David's condition had worsened considerably ( … ) (Boston Globe).
Reports of children's cancer appeared to reinforce the tendency to regard health care as a limitless resource by generating a readiness to stigmatise bureaucrats. They also failed to dampen hopes for miracle cures since, unlike bureaucrats, doctors (who provided these extremely expensive treatments) were nowhere criticised in the news reports, being aligned with the family and community in leading efforts to rescue children. The competence of medical and nursing care was not raised at all in the newspaper accounts; it was a taken-for-granted feature of the treatment of childhood cancer.
In the parents’ accounts, there was clear evidence of notions of struggle, but their emplotment of the characters and events of struggle differed significantly from those of newspapers. ‘Struggle’ was most evident when parents spoke of obtaining a diagnosis for their child, as we have reported earlier (Dixon-Woods et al. 2001). In the struggle for diagnosis, parents report incompetent or uncaring doctors as the ‘villains’, casting themselves in the role of advocates or in the role of the oppressed. Parents were not inclined to dramatise their child as the innocent victim of malign forces: instead, their accounts focused on the notion of disruption and questions about ‘why my child, why us?’. Perhaps because of the particular features of the National Health Service, fewer accounts of struggles with bureaucrats were given, but parents do identify deficiencies in services, discontinuities in care and difficulties with some healthcare staff.
[Child] had his third block out in the community though, he didn’t go into hospital and I felt there was a lack of communication there. It's probably been rectified now but we were having to telephone the hospital and we were dependent on the blood tests and the district nurses were nervous because they didn’t want to give the treatments until they had some more verification before they’d give the drugs. [ … ] but it's a long time and you know that it's very aggressive treatment so I think that they could improve there. It's OK sending you out but we had a change over of Macmillan nurse at that time so I didn’t really have a contact of a Macmillan nurse so I had to ring the ward and I felt that I was a nuisance but by the same token we were left to drift I felt (Mother of male child aged 9).
Parents reported struggles in managing the day-to-day routines and practical requirements of their child's treatment. These included the struggle to ensure that their child was properly fed, that their child complied with treatment, that their child did not become overly distressed, that their child had access to supportive and competent medical and nursing care, and had access to education and friendships. Their struggles to fulfil their own personal needs (for sleep, food, respite) were often muted, though discernible, in these accounts. Less practically, parents engaged in struggles to protect their child's future and their child's identity, and struggled between the two worlds of home and hospital. Parents almost never spoke explicitly of death or the possibility of death in their accounts, but it clearly haunted and shaped their accounts as the background to much of their struggle:
I told her that it is your sister who is very seriously ill, until then we’d told her it was OK. I told her she's really seriously ill and it's called cancer. She said ‘oh no she's not going to die mum, is she going to die?’. Then I told her [child’s] first words were ‘mummy does it mean I’m going to die?’. I said no it doesn’t mean you’re going to die, it means it's serious and you’re going to have medications (Mother of female child aged 11).