Icccpo Newsletter 2004-1

ICCCPOInternational Confederation of Childhood Cancer Parent Organizations Vol. 11/No. 1, 2004

C o n t e n t s

Notes from the editors 1

Post-traumatic growth 2

A journey through cancer

– parental views, then and now 4

Childhood cancer -

a mother’s retorspective 7

The parent during the final stage 9

Announcements 12

Reports from regional groups 13

Executive committee 20

ICCCPO Newsletter

Spring 2004

Volume 11, No. 1

Published three times

per year

Editorial Staff:

Gerlind Bode

Pia Bonini

Sue H. Grant

Marianne Naafs-

Wilstra

Jacqueline Costelloe

Address of Secretariat:

International

Confederation of

Childhood Cancer

Parent Organizations,

c/o VOKK,

Schouwstede 2d

3431 JB Nieuwegein, NL

tel: +31 (30) 2422944

fax: +31 (30) 2422945

Bank Account:

CenE Bankiers

Postbus 85100

3508 AC Utrecht

Netherlands

Dollar account 16128

BIC: CEBUNL2U

IBAN: NL09 CEBU 0000 0161 28

Euro account 699211875

BIC: CEBUNL2U

IBAN: NL49 CEBU 0699 2118 75

Si preferien recibir

este bolentin en la

edicion en castellano,

por favore porganse

en contacto con la

Secretaria de ICCCPO

en Hollanda.

Notes from the editors

www.icccpo.org

This year, ICCCPO commemorates its tenthanniversary. It was in May of the year 1994 thatthe statutes of the newly created organizationwere signed in Valencia (Spain). This event willbe celebrated during an international conference– again in Valencia – on May 27 - 29, 2004 (s.also announcements, p. 12). A special celebrationof this tenth anniversary will be included in theICCCPO meeting in Oslo (Sept. 16 – 19, 2004).The program of this meeting and the invitation tothe AGA will soon be circulated to all groups andcan also be found on www.icccpo.org. We arepreparing a commemorative booklet reporting onthose first ten years, which will go out to allmember groups after the Valencia meeting.

This newsletter issue is relatively heavy onwords as we were lucky to get the permission forthe reprint of several contributions fromrenowned magazines. But it also includes reports

from different groups throughout the ICCCPO-world – and it is always refreshing to hear aboutthe various activities, mostly reported with a lotof enthusiasm and energetic spirit. We also loveto receive pictures showing those events toinclude them with the texts. Unfortuneately, theyare often of pure quality and connot be repro-duced. So, don’t be too disappointed, if your pic-tures are not picked up in the newsletter, it isusually simply for technical reasons. Please keepon sending us your contributions.

The International Childhood Cancer Day wascelebrated again in many countries with variousevents. A summery of all these activities will becollected again on a CD and be given to allgroups interested in the ICCD. It seems that slow-ly this date is accepted by the public and themedia – and maybe one day also by the UN.

We hope we will meet many of you at any ofthe up-coming events and will be able to talk anddiscuss with you all the common issues ICCCPOpeople share.

We would also urge you to inform us imm-ediatly of any address changes (name, street, tel-no, email) as it is essential to be updated in orderto keep a good communication going. Thank you.

Best greetings to all of youGerlind Bode

(for the editorial team)

Art competion during conference in Sumy (s. p. 18)

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ICCCPO · newsletter · no.1/2004

Post-Traumatic GrowthUnderstanding a New Field of Research:An interview with Dr. Mark Chesler by Steven Ungerleider, Ph.D. (editor of the Prevention Researcher)

ued stress/ struggle,or serious disability/dysfunction. Second,we submitted a sum-mary of the inform-ants’ report of posi-tive growth to anindependent panel ofsurvivors of childhood cancer, asking them whether ornot they had similar experiences and whether theseresults were believable.

Dr. Ungerleider:

What is the difference between Post-Traumatic

growth and resilience?

Dr. Chesler: At the present time, a variety of termsare being introduced to describe the phenomenon ofpositive coping subsequent to a life crisis or trauma.Given the emerging state of the research in this area,meaningful, agreed-upon, empirically sound distinc-tions do not yet exist between terms such as PTG,Resilience, Thriving, Benefit Finding, and others.Different scholars use different terms. Several

Post-traumatic growth is an emerging and rap-

idly growing field of interest. Dr. Mark Chesler of

the University of Michigan, along with his col-

leagues, Dr. Bradley Zebrack of the University of

Southern California, and Dr. Carla Parry of the

University of Colorado Health Sciences Center,

have been examining the emergence of post-

traumatic growth in long-term survivors of child-

hood cancer. In an effort to understand the con-

cept of post-traumatic growth better, Dr. Chesler

has agreed to answer our questions about his

exciting new concept.

Dr. Ungerleider:

What is Post-Traumatic-Growth?

Dr. Chesler: Most people are familiar with the con-cept of post-traumatic stress (PTS). PTS is the recur-rent experience of psychological, psychophysical,and/or social symptoms as a result of trauma orcrisis. Psychological symptoms can include anxiety,fear, nightmares or hypochondria. Psychophysicalsymptoms can include sweating upon reminders andfaintness upon certain smells associated with thecrisis. Social symptoms can include lowered aspira-tions and school dropout. Post-traumatic stress dis-order (PTSD) is a formal psychiatric diagnosis associ-ated with the extreme form of PTS: PTSD and PTS arenot interchangeable terms. Post-traumatic growth(PTG), on the other hand, is the experience ofexpression of positive life change as an outcome of atrauma or life crisis. This does not mean that anyoneis ”glad that they had cancer”, but that they report”having experienced benefits” or ”having madesomething positive out of it.”

I highlight ”outcome” for two reasons. First, since itis unusual to have before-after measures of peopleexperiencing traumatic events or illnesses, the reportof PTG is dependent upon post-hoc reflections byinformants. Second, it is dependent upon informants’attributions of growth or change in their life due tothe trauma. On both counts, without pre- and post-measures, one must be cautious about whether realchange has occurred. As a result, questions about theaccuracy or validity of post-hoc reflections of positivechange are common.

We sought to assess the validity of our researchresults regarding PTG in two ways. First, we submittedthe tape transcripts of in-depth interviews with sur-vivors of childhood cancer to a panel of pediatriconcology social workers, asking them to categorizeinformants regarding their post-traumatic psychoso-cial status: positive growth. return to normal, contin-

Post-traumatic growth is the experience

or expression of positive life change as an

outcome of a trauma or life crisis.

(although not by any means universal) suggest that”resilience” describes a ”bounce back” or return toprior/normal functioning, while both ”thriving” andPTG suggest something gained or a higher level ofcoping or psychosocial quality of life. One importantdistinction in this literature is between a threshold orlevel of coping measure and a measure of growth orpositive change.Editor: can Post-Traumatic Growth and Post-

Traumatic stress occur in the same person,

tied to the same event?

Dr. Chesler: Yes, at least according to the theoreti-cal frames and measures currently in use. Post-trau-matic growth requires people to be able to rememberthe struggle associated with the trauma or life crisis,not to deny or ignore it. To remember this pain anduncertainty, to articulate it, and integrate it into one’slife, is an essential element in attaining PTG.

The report of such painful memories (and associat-ed psychological, psychophysical and social symptoms)is included in some measures of PTS and may also betaken as a sign of continuing stress.IC

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PTG and PTS are not the same, but some elementsof each of them may appear in the same person. Mycolleagues and I are hoping to test this possibility inthe near future.

Dr. Ungerleider: What are some of the

experiences a youth might have when

experiencing PTG?

Dr. Chesler: It is important to remember here thatI am not suggesting that most survivors of childhoodcancer experience PTG, but some do. Those who doreport growth do so in some of the following terms,and this is some of the evidence of PTG:

� New and greater strength (psychological tough-ness/resilience)

� Greater compassion and empathy for others (forthose who have illness/disabilities, for one’s par-ents/siblings)

� Greater psychological/emotional maturity (andgreater than their age-peers)

� A recognition of vulnerability and struggle, and adeeper appreciation of life.

� New values and life priorities (often not so mate-rialistic, heightened intimacy in relationships)

� Greater existential or psychospiritual clarity (whoam I, what is my purpose in life)

Dr. Ungerleider:

What capacities or experiences characterize

youths who experience Post-Traumatic Growth?

Is there a difference between those who

develop PTG and PTS, does resiliency play a

role, or wealth or other social status factors?

Dr. Chesler: Remember that we are talking aboutgrowth or change, not a threshold level of coping orfunctioning, per se. So it is possible for someone whowas at a high level of coping/functioning prior to diag-nosis and treatment to still be at a high level of func-tioning/coping and yet not evidence PTG. And it is pos-sible for someone who was previously at a low level ofcoping/functioning to show evidence of PTG but still notachieve the same level of functioning/coping as the for-mer person . Consider the somewhat hypothetical caseof a young man from an alcoholic and broken/abusivefamily, with a brother in prison. Prior to being diagnosedwith cancer, this young man was ready to drop out ofhigh school and had a poor future trajectory. He reportsthat during his extended and repeated stays in the hos-pital he found in the hospital staff the ”only loving fam-ily I ever had”, and from their modelling and supportdecided to get counselling, gained a GED, is nowattending a community college, and has significant pro-fessional aspirations. He has grown and attributes hisgrowth in large part to the childhood cancer experience.At the same time, he is still not headed to the elite col-leges and the kind of socio-economic status as someother young survivors (who may achieve well but may ormay not have experienced growth).

It makes sense to theorize that some pre-existingpsychological coping capacity (such as resiliency) isinvolved in experiencing PTG. We have not assessedsuch internal psychological states, and how to assesstheir pre-existing natures and roles presents a sub-stantial research dilemma. This would be a good futureresearch agenda.

It also makes sense to theorize the involvement ofcertain social status characteristics such as wealth,race/ethnicity, coming from a nuclear family, or havingloving family and friends. Our sample was not largeenough to provide more than guesses about this. Butremember that we are talking about growth, not level,and growth can happen at any level of social status …although we can assume that higher status families canfind more resources to promote growth than can lowerstatus families. Or as a corollary, medical and socialservice institutions in higher status communities canprovide more growth productive resources and supportthan can institutions in lower status communities.

On the basis of our data, what do we know or sus-pect that makes a difference? Note that all the follow-ing are as much propositions as results; they should beexplored and tested further.

Disease/treatment outcome that do not includemajor physical after-effects (as experienced andreported by the survivors themselves.) For some, anamputation is not major while for others it is. Manysurvivors of brain tumors do report major treatmentafter-effects, especially in the cognitive and motoricrealm. Thus, both their more serious after-effects andpotentially compromised cognitive capacity may affecttheir ability to experience, integrate and articulate acoherent growth narrative.

The cognitive or developmental capacity to makesense out of the experience and to integrate it intoone’s life story, essentially the ability to construct andarticulate a growth narrative. Thus, being diagnosed/treated at an age when one could understand andmake sense of (or have others explain to them) whatwas happening is essential.

The age of diagnosis and treatment. Some veryyoung survivors have little memory of the trauma orcrisis of childhood cancer. If they also have no or mini-mal after-effects they may have had no subjective cri-sis to struggle with (or no conscious memory of astruggle) and no story to narrate. Further, survivorswho were diagnosed after the age of 20 or so mayhave already developed a fairly clear identity in theirlife story, making it more difficult to see majorchanges or to integrate the cancer experience as acentral growth feature of their perhaps well-formedlives. Youngsters and teenagers diagnosed and treatedat an age of developmental stage where their identi-ties and life stories are just beginning to be formedmay find it more necessary and easier to integrate thecancer experience into this story.

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Support from significant others who can providelove, a hopeful message, and a supportive story of theillness experience. This may include parents, medicalpersonnel, friends, and other survivors, among others.Certainly, wise and skilful medical and social servicepractitioners can make a difference as well – if theyare prepared to focus appropriately on growth and notjust survival of recovery.

An understanding (provided by others) that thechild or young person him/herself was not to blamefor the illness nor responsible for the recovery. In thevast majority of cases of childhood cancer we do notknow the cause of the disease; it is an accident or actof fate and not a product of personal or familialbehavior. Thus, self-blame is irrelevant and does nothave to be wrestled with or overcome, as is the casewith many adult cancers or other illnesses/conditionsor traumatic events.

Dr. Ungerleider: Is there any evidence that

PTG occurs for survivors of other traumatic

experiences?

Dr. Chesler: Yes. The concept was developed earli-er out of research into the experience of survivors ofthese conditions, especially those that had consider-able support ‘(professional and lay/familial) and whosaw, or could be helped to see, that they were notresponsible for what had befallen them, reportedmajor growth in their lives.

Dr. Ungerleider: How extensive is the

literature in PTG? And how does one learn how

to intervene in ways that promote it?

Dr. Chesler: The literature is sparse but growingrapidly, with investigations into a variety of traumaticsituations and practice arenas, sustained in part by themerging tradition of positive psychology. It makessense that some of the service programs or interven-tions that are proposed to reduce post-traumaticstress should promote PTG (e.g. family stemsapproached to coping, support from significant oth-ers). But reducing the threat of dysfunction or ame-liorating stress is not the same as promoting growth,and other nets of interventions need to be developed.Chief among them may be the effort, early on in treat-ment, to help survivors develop an understanding oftheir situation and to integrate their cancer experi-ence in their lives. The development of a coherent nar-rative, as suggested above, is critical. One oftenunderused resource in this regard is the wisdom andcomraderie of other survivors of childhood cancer. Notonly can these ”veterans” share a story and help newsurvivors piece together their own, but by workingtogether as a group they may create a ”narrative com-munity” that can enter the public arena, helping toestablish a new culture around childhood cancer.

Mark Chesler, Ph.D.Professor of Sociology

University of Michigan, Ann Arbor (USA)This text was first printed in The Prevention Researcher Vol. 10,

Suppl. December 2003. Reprint here with the kind permission ofthe author and the journal.

Antonya Cooper

A journey through cancer – parental views, then and now

At the beginning of 1980, our son Hamish was out-wardly a healthy and fun loving boy of 5. By his sixthbirthday in February of that year, although he stillseemed well, he had occasionally complained of anabdominal pain. We all know that often crops up withyoung children. I was not unduly concerned, althoughI discreetly checked for worries at school and took amore frequent interest in his stools. During the follow-ing weeks, the tummy aches were mentioned moreoften and his normally voracious appetite slackenedoff. Inside me alarm bells started ringing. Early in May,I began what was to prove a long and agonizing seriesof visits to our local Health Center.

Our own doctor was away on sabbatical leave. As afamily, we had not attended our Health Center muchuntil then. He was certainly the only member of thepractice who really knew Hamish. Only he could haveseen for himself that, in comparison with Hamish’susual appearance, he was indeed not well. The colorwas fading from his face, the robust body becoming

thinner and more lethargic. He sometimes complainedof pains in his thigh, sometimes in his chest or hisabdomen. Occasionally he would scream with painwhen I hugged him. My son’s sparkle was disappearing.Friends and teachers commented on the changes.

During the course of 13 weeks, we consulted fivedifferent general practitioners (GPs) (none of them ourfamiliar doctor, he was still away) and a sixth GP onthe phone when Hamish ran a particularly high feverin the middle of one night. None of them, while lis-tening most sympathetically, could provide a firmdiagnosis. I was repeatedly told that it was probably a”virus” and it should eventually go away. I requested ahaemoglobin count. While revealing slight anaemia, itwas not considered significant.

At the beginning of July, I could stand it no longer.Something inside me knew my son was seriously ill.With no forthcoming referral from any GP, I made aprivate appointment with a local pediatrician. Thenight before I saw him, I wrote down every detail ofIC

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my child’s case history to that time. Hamish wasexamined at great length. The pediatrician told me hecould find no problem. The choking fear I felt at thatmoment was almost stifling. I took a deep breath andinsisted on two tests. One, a broader spectrum bloodscreen (in fact I suggested testing for glandular fever)and two, a simple chest x-ray. The latter could surelynot offend the pediatrician who was, quite reasonably,keen not to inflict invasive procedure on a child for noapparent symptom – and, incidentally informed me forthe first time that Hamish had dextrocardia! Within 24hours, we received a phone call at home. Hamish’sblood erythrocyte sedimentation rate (ESR) was veryhigh. We were advised to admit him immediately tothe hospital for investigation.

I know they had a list. It went, I guessed, from com-mon cold to cancer. As each day passed and eachintravenous pylogram (IVP), electrocardiogram (ECG),ultrasound (US) scan, and blood sample was taken Ifound myself preparing my mind to cope with what Iknew would come. On 16 July 1980, I was told that myson had a stage IV neuroblastoma and, without treat-ment, was likely to survive no longer than 3-4 months.It may be hard to understand, but my tears were ofrelief – at last someone had recognized our plight!

I wrote this many years ago and have since beenclosely involved with the Neuroblastoma Society,which this year marks its 20th anniversary. Hamishdied on 1 December 1981 and this year I set out to dis-cover what changes there might have been in theexperiences of parents then and now. It’s one thing tobe aware of the progress that may have been made inthe world of medical research which is workingtowards better treatment and eventual cure for thisaggressive childhood tumor. I wanted to find out howattitudes now may differ as regard possible improve-ments in diagnosis and care. Is the average GP anymore aware these days of the existence of neuroblas-toma? Does that front line medic take the views of theparent more seriously now? I know that the presenta-tion of something as rare as a neuroblastoma may notoccur even once in the vocational life of a family doc-tor. That, however, should ensure that the modern GPis more inclined to refer the patient – it is simply acase of listening to the parent. In the course of myresearch, I was invited to attend a pediatric oncologyclinic. It was deeply disturbing to learn that there areoften still long delays between initial presentation atthe local Health center and the eventual assessmentand diagnosis in the hospital. This is not to suggestthat those delays might affect the prognosis, but tohighlight the fact that the stresses involved for thosefamilies are largely avoidable when more accurateawareness is applied.

Hamish was diagnosed at a regional hospital which,despite being an academic center of medical excel-lence, had at that time no pediatric oncology unit. He

was referred to a specialist London hospital where hestarted the offered treatment. Within a very shorttime, he was clocking up many cannula insertionsdaily. He got to the outrageous figure of 100 needlesbefore the advent in the United Kingdom (UK) of theHickman catheter making chemotherapy and bloodsampling an infinitely less gruesome trial. Hamish usedto mark out of ten to those that used the needles, as ifto make their jobs even more testing!

Staff at the specialist hospital began to cope withmy hunger for knowledge. It must have been verydaunting to be faced, not only with a set of veryfrightened parents, but a mother who insisted on hav-ing every cytotoxic drug’s chemical formula and histo-ry explained. I needed to be an integral part of themedical team to the extent that I was keen to admin-ister the ketamine that was used to dissociate my childfrom the bone marrow trephine to be taken. I amassured by a local paediatric oncologist that proceduretoday is covered by a more conventional anaesthetic.

Continuing ”normal” life was then very important toour family and a good example of this was the inten-tion to allow Hamish as much access to school as pos-sible. Although there was a Pediatric OncologyCommunity Nurse attached to the regional hospital,that role was a rarity compared with the numbers oftoday’s Outreach Nurses. So, in order for Hamish’schums to understand the condition of their friendincluding an explanation of certain precautions thathe may need, I was the one to stand in front of hisclass and tell them about his disease and show themthe Hickman catheter just so they would not find thewhole situation frightening, but also so that theywould understand that Hamish should not be involvedin rough play.

I am sure that the more open communication andmedia coverage about the whole world of medicine,and cancer in particular, has helped greater sections ofthe public to a fuller understanding of the issues sur-rounding a cancer sufferer. In 2003, we have easyaccess to so many sources of advice and guidance,especially via the internet, that it does not take long todiscover the protocols of care that might surround afriend or relation.

Patient comfort was then not easy to achieve. Thespecialist hospital had eternal laundry and linen prob-lems. Often there were not even enough sheets, blan-kets or pillows (let alone pillow cases) to go around.Finding this unacceptable when my child was, in anycase, being subjected to the sort of treatment thatmany humans would not put their pets through, wemarched on to the ward for our second visit clutchinga duvet from home. This, in due course, generated themost enormous row within the hospital administra-tion. Needless to say all members of the hospital staffwere only too glad to allow such an invasion of homecomfort. The Department of Health and Social Security,

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however, represented by a fierce Scottish female whoappeared one day at the bottom of Hamish’s bed,claimed we were violating safety precautions.Apparently this ”downie” (to use the messenger’sterm), was a fire hazard! Were the children likely tosmoke in bed, we wondered? An outspoken Irish sur-geon at that time was reported to snort indignantlythat the very idea was ridiculous as he had ”Neverheard of a duck on fire!” Today, most of the children onpediatric oncology wards are cozily covered by duvetsif wanted and, in any case, items from home would notbe viewed as an insult to the hospital environment.

The existence of a parent’s common room and thefacilities for producing light refreshments ”on theward” was another rarity. I believe the ability to escapefor a supportive chat with another inmate is now wellcatered for and one should not underestimate thevalue of such facilities. A few minutes away from thechild patient and the sharing of fear and hopes withlike-minded people can be very therapeutic. The soli-darity gained by the neutral revelations within theconfines of such an area is almost always beneficial tothose circumstances that encourage others talk; but Iwas aware that, for me, that was a good way to putsome of my concerns into perspective. To discover thatparent A was a mother on the breadline with a hus-band working abroad and four other children in thefamily or that parent B was a single father whose bosshad reacted unsympathetically to the time off workmade me immensely grateful that my husband’s familybusiness meant that he and I could be together when-ever we needed and that our bewildered, 5 year olddaughter was being well cared for by a raft of lovingrelations and friends.

The world’s first children’s hospice, a place of”respice” for families like ours, was still to be builtalmost a year after Hamish’s death. The vision of sister(then Mother) Frances Dominica of Oxford for such a”home from home”, called Helen House, was to changeso many approaches to caring for children with life-threatening or life-limiting conditions. Since thatworld’s first in1982, there are now more than 27 simi-lar places, just in the UK, with more being developedas I write. In 3 months time, there will be another”first” in Oxford – a building called Douglas House foryoung people aged between 18 and 40 years. Progressin medicine has succeeded in extending the lives ofsome of those who 20 or more years ago were notexpected to survive childhood.

Pain control, thankfully, has advanced most of allsince those hyper-cautious days in the early 1980s.Many health professionals, especially those away fromthe specialty centers, had the specter of the ‘Dr. Arthurcase’* sitting on their shoulders. Some of them arguedfor the possibility to addiction to opiates. Here wewere, witnessing a child in unimaginably pain who wasalmost certainly going to die of cancer and a medical

person dared to suggest that the reason for not pro-viding (in my pitiful parental view) enough pain con-trol was a concern for diamorphine dependency! AgainI refer to the treatment of animals. A self-respectingveterinary surgeon would no sooner inflict on or allowpain in an animal than cut off their own arm. Today wehave patient-administered syringe drivers to keepabreast of pain levels. There are also transdermalpatches releasing Fentanyl. The whole ethos of pallia-tive care is part of modern medicine. My own experi-ence of postoperative medication assures me of a verydifferent emphasis on the suppression of pain nowa-days.

These are my hopes for the future.

I wish all medical personnel to regard any parent ofany sick child as a valuable member of the total caringteam. Even those parents who give an impression ofnot wholly grasping the concept of treatment, proto-col, medication or medical procedure, need the empa-thy of the doctors, nurses, social workers and anyattendant care-givers. The ability to stand alongside,even when all therapy is failing, to be honest in theface of the inevitable or even the likely, is lovingly-given care at its most complete.

I wish that no parent should ever feel the need tobecome assertive in order to be heard. Too often westill learn that parents feel they are regarded as ”neu-rotic” when attempting to bring a concern to thenotice of someone with the power to comprehend.

I wish that all those well-intentioned instructiveleaflets or booklets, so meticulously produced byorganizations for the information of frightened andsuffering parents, should not be hiding in some cup-board never to see the light of day! Hand them out!

I wish that those who would most benefit fromhearing the frustrations of some parents should beshut in the same room and forced to listen. Those whoreally care do not need converting. There are many ofus who are available and willing to help health profes-sionals to better understand the needs of the familiesinvolved with life-threatening conditions. Please useus as sounding boards, speakers, broadcasters, andwriters. The barrier I most fear is the resounding clangof the division that separates some health profession-als from patients and families. You can see the ”curtaincome down” across the eyes of the medical person. Theexplanation might be that they feel the need for awholly objective approach to protect the efficiency oftheir medical judgments, let alone their own emotions.But that is not en excuse, and greater progress will bemade in their chosen vocation if the professional com-munication is fully two-way with the sufferers. Overthe 21 years since the death of my son Hamish, I havewitnessed the best forms of support, care, guidanceand healing given by those willing to expose theirhumanity and ”share” the experience.IC

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*Dr. Arthur, a highly respected paediatrician, was accused, and acquitted, of blatant active euthanasia. In 1980, a Downs syndrome babyin his care was rejected by the mother soon after birth. Dr. Arthur prescirbed a sedative designed to stop the baby seeking sustenance.The child was given only water and died within 3 days.

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Antonya CooperThis article was first published in the European Journal of Cancer

(EJC), Nov. 2003, Vol. 38, No. 17 and is reprinted here with thekind permission of the journal and the author.

Acknowledgments

I would like to thank the following for their encour-agement and their help in my update research: ChrisMitchell, Denise Tritton, Hannah, Mike Stevens, JudithArmstrong, Annabel Foot, Jon Pritchard, A.R.C. andR.C.T.J.

Renate Pfeifer

Childhood Cancer – a Mother’s Retrospective

In March 1994, when our son Stefan was 13 yearsof age, he was diagnosed with acute lymphoblasticleukaemia (ALL). He was treated with chemotherapyaccording to the BFM-92 protocol in the Children’sUniversity Hospital in Bonn, Germany, followed bybrain irradiation and maintenance therapy. He recov-ered slowly from the side-effects of the disease and itstreatment and life seemed to be ”normal” again, whenin November 1997, we were shocked again by thenews that our son Martin, then aged 18, was diag-nosed with osteosarcoma of the pelvis. He too receivedchemotherapy, was operated upon and received fur-ther courses of chemotherapy according to the COSS-96 Protocol. One half of his pelvis and one hip jointhad to be removed. As a result, he is now handicapped,walks with a severe limp, cannot run or cycle andneeds special cushions for sitting. However, he haslearned to cope with the deficiencies relatively well.

Only a year later, in December 1998, Stefan, then 18years old, had a relapse of his ALL, which was treatedwith the more intensive relapse therapy and againbrain irradiation and maintenance therapy.

Today, both our sons are well integrated in theirsocial environment and are presently attending univer-sity: one is at medical school while the other studiescomputer science. You can imagine that we all hopethat cancer is now a part of our past. It is not verycommon that two children in a family – we also have adaughter who is now 20 years old – are affected bythis dreadful disease and our experience should notpanic other parents. We would like to illustrate hereour personal experiences and how we learnt to cope.

At the end of Stefan’s first period of treatment, Istarted to get involved in the local parent initiative forchildren with cancer at the University Hospital inBonn, as well as in the national organization of allparent initiatives in Germany, which shares its officewith the local group. Today, I coordinate a school proj-ect designed and sponsored by the local parent initia-tive that links the patients with their home school viaa specific ‘Intranet’. School-aged patients, when theycome to the ward, are equipped with a laptop withinternet access which enables them to participate intheir individual classroom teaching. We also providethe server and a camera in the classrooms of the homeschool, instruct the teachers and the other classmateswho are generally very enthusiastic about this way ofbeing able to communicate with the student in hospi-tal. Thus, the patients are closely connected to theirclassmates and teachers, keep up with their curriculumand are informed about all school events.

The diagnosis ‘childhood cancer’ was a great shockfor us, especially as it hit our family three times.Retrospectively, we can say we were lucky to live in atown with a qualified paediatric cancer unit where wegot the proper treatment and excellent care. We werethoroughly informed about all aspects of the diseaseand its treatment. We got answers to almost all ourquestions – of course not the one ”why us?”, which isstill on our minds even though we, the parents, under-went genetic counselling. During the treatment period,doctors and nurses always found the time to talk to us,explained each new step and all the medicationinvolved. Most of the time we were prepared for all theexpected side effects and the reasons why these orthose measures had to be taken. Our sons were alsowell informed, which certainly increased their compli-ance. Both had a port-a-cath implanted which easedthe application of the necessary infusions. They alwaysknew the doses of each medication and were able tocontrol the infusion pumps themselves which gavethem independence and a sense of responsibility.

When I met with parents from other hospitals I wasamazed how much I knew about the diseases of mysons compared to these other parents. Of course, somemedical background - my husband is a general practi-tioner - helped. But frankly, most of the knowledge I

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acquired about the disease I got on the ward and frommy work with the ‘parent initiative’. We felt that thisknowledge und understanding helped us in any deci-sion making and in the support of our sons as patients.We also realized that honest information was veryimportant for our sons - and any other patient - to beable to endure the treatment procedures, with all theirimplications.

When we were in the hospital for the first time, wewere appalled about the situation on the ward. Itneeded renovation badly: there were only two bath-rooms for 16 beds, large rooms with four or more beds,no privacy – especially uncomfortable for teenagepatients! The University budget had no finances forextensive renovations. So the ‘parent initiative’ tookaction and raised enough money for the renovation ofthe old ward and the building of a new annexe whichadded double the space to the Unit. Now we canproudly present a modern set-up equipped for all nec-essary treatment modalities: comfortable single ordouble bed rooms with private bathrooms, isolationrooms for stem cell transplantation, a spacious play-room which at night times is also a meeting room forthe teenagers, a meeting room with a kitchenette forparents, two modern treatment rooms, a fullyequipped outpatient unit with day beds and the stemcell separation equipment, rooms for the psychosocialstaff and much more. In short, the situation haschanged much for the better.

In spite of the outward appearance of the Unit weexperienced very professional medical care from thevery beginning, and this gave us confidence in all deci-sions that had to be made. The well-trained nurses onthe ward are an essential part of the team. They arethe first ones to notice any changes in the patients’behaviour or appearance and are able to react in aappropriate manner. They are not only doing theirmedical routine but also in comforting the patients,taking their fears seriously and yielding to their likesand dislikes as much as possible, they help in so manyother ways.

Psychosocial support is an integral part of the treat-ment. Two psychologists, a social worker and a child-care worker take care of the entire family from dayone. They may help extensively for example in all legaland financial aspects, or support the family only whenneeded. We – apparently – had a well functioningfamily and needed only very sporadic support, but weknow of many families or especially single parents whofortunately got a lot of help throughout the course ofintensive treatment and even later on. Today the Unitalso has a homecare team: four nurses who visit thefamilies at home for applying care that would have tobe done in the clinic. This kind of help is invaluableespecially for terminally ill children, who can be treat-ed in the home situation.

With each new period of hospitalisation, our familyhad to yield to the unexpected situation. The thirdtime around we were already experienced, though thetreatment was much more intensive and our fears –realistically - much more profound. As we live not farfrom the hospital we were able to take ‘shifts’ in visit-ing the patient - we, the parents, but also the siblings,school friends and girlfriends. Often the whole familygathered around the bed but we also felt it veryimportant to leave the siblings and friends alone witheach other at times. Thus, they could communicatewith each other about worries they may have wantedto hide from us, their parents. However most impor-tant, all of them were well informed at all times.

We are grateful for the recent developments in thetreatment of childhood cancer. The therapies, althoughmore intensive these days, are more tolerable withmore effective supportive care, especially the effectivecontrol of nausea and vomiting. We know from formerpatients how much more difficult the therapy wouldhave been without these advances.

For Stefan, the irradiation and maintenance therapywas each time a frustrating burden. Both times heexperienced severe side effects which hampered himas he wanted to be back to normal life as quickly aspossible. Instead he felt very tired, often dizzy and sick.But his social surroundings -friends, family - backedhim up as much as possible and he finished schoolwith good grades. It hurt him very much when he real-ized that he could not continue with his favouritesport, tennis, as his backbone is damaged due to thedisease. He started to invest his energy in musicinstead and is now a very passionate drummer, plays indifferent bands - for fun and for money!

Martin’s therapy was different, especially with theinvasive operation - which was done in another city -then followed by courses of chemotherapy: one weekin hospital, two weeks at home. In between anotheroperation: lung metastases had to be removed. Heneeded much more physical care as he was in a castfrom the waist down for most of with the treatmenttime. And when the cast was removed he had to learnwalking with part of his hip missing and one leg short-er than the other – a young adult who needed help likea baby! It was not easy for him to accept this helpfrom any of us, let alone the nurses. Driven by his deepdesire to become independent again as quickly as pos-sible he trained his body mercilessly. As soon as possi-ble, he took driving lessons and got his driver’s licence.We bought him a small car and thus helped him takeanother step towards independence. Nowadays, helives in another city, has a girl friend and hopefully willfinish his studies soon.

Both our sons were teenagers, almost young adults,when they were diagnosed with cancer. Nevertheless,they were treated on a pediatric ward, which wasgood. We felt that the care and treatment for theseIC

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kinds of diseases were in the ‘best hands’ on this ward.The boys were always respected as individuals withrights of their own in the decision-making process.Throughout the treatment, they are often enoughdependent on help from others - nurses, parents, sib-lings. In turn we all respected their needs and wishesin order to give them back their lost independence anda sense of responsibility for their own fate

In Germany, the family of a child with cancer isentitled to a four week long rehabilitation period, paidby the general health insurance, in especially qualifiedcenters. We decided not to take advantage of this pos-sibility but took an extended vacation instead.

Wishes for the future

All parents and patients would like to see survivalrates increase to 100%. It would be great if every childwith cancer had the chance to survive. Meanwhile, thefear of a possible relapse is hovering over us all like aDamocles sword.

In the time that we were actively involved as par-ents of patients much has changed for the better inthe treatment procedures. To give a few examples,there is better supportive care and pain control, con-trol of nausea and vomiting has improved and anaes-

thesia is now applied for painful procedures. It is ourwish that the quality of care will not suffer from theexpected budget costs in our health system. We wouldalso suggest a better coordination among all of theclinics involved in the treatment. This would cut downon waiting times and would certainly enhance theefficiency.

Our sons would have liked a set-up that was moresuitable for teenagers or young adults. Although theypreferred the treatment in the paediatric Unit with theexpertise of the paediatric oncologists, they wouldhave liked to have a place of their own on the ward, aroom for teenagers, a retreat where patients of theirage group could gather and maybe listen to ‘their’music or play ‘their’ games or just talk. Of course, theywould have preferred shorter periods in hospital and, ifpossible a shorter treatment time over all – and, mostof all, no pain. They still hope for more understandingamong their peers or in their social environment forthe disease and its long-term effects.

Renate PfeiferGerman Leukemia FoundationEmail: [email protected]

This article was first published in the European Journal of Cancer(EJC), Nov. 2003, Vol. 38, No. 17 and is reprinted here with the

kind permission of the journal and the author.

Maria Trifonidis

The parent during the final stageI think that people who came through life without

having become parents or not having felt parenthood,are not aware of the depth and the extension of humanfeelings, which constitute the real essence of life.

For all that I am going to say I have had no recoursefrom any bibliography. It is a statement of the soul. Acommon soul, that of my husband and myself, alsothat of the parents of Theodora and of Christos, that ofthe parents of Michael and Steve and of so many otherparents we encountered along the way.

The final stage

Having to give a definition as to what the FinalStage is, I would specify that period of time whichbegins following the last relapse until the lastmoment.

The time period between the diagnosis

and the relapse

A certain period of time has lapsed since the diagno-sis. The parent has pulled himself together, all the bitsand pieces of a broken heart and, as far as this is possi-ble, has restarted the course of life and family. With allthe strength at his disposal, he focuses all actions andinterests on one and only point: this specific child. He isbeing informed of the sickness and of what he is

expected to do, he follows the doctor’s advice faithful-ly, reads everything pertaining to this matter that hemay come across and tends to believe that he hasbecome the healer of ”that and only sickness”.

Subconsciously he has already engaged himself in aphase of ”preparation” to meet the final stage, withouthis knowing it or his accepting it. If all turns out well,this preparation, which will precede, will intensify thefeeling of victory and relief.

If however, things do not turn out as expected, suchpreparation will prove even more substantial. Where asubsequent relapse seems the last limit of endurance,the distressed parent ascertains with surprise that hecan still endure, that he is still there to be confrontedwith, because somewhere in the back of his mind he hasbeen prepared for such an outcome and he expected it.

The relapse

The time of the relapse contains less surprise thaninsupportable death pain.

The parent’s attention is not at this time conveyedin efforts to learn, to ask, to pull his shattered selftogether.

He is now aware of everything he could amass tolearn about the ”illness”, the ”relapse”, the ”possibili-

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Medical and paramedical personnel

All medical and paramedical personnel ought atthis time to have a distinctive presence instead of dis-appearing, considering that their assistance in offeringany therapy is of no avail. They should forget to actonly from a sheer professional aspect and shouldstand by with kindness, clarity, politeness, earnestness,patience and respect opposite the psychologicaltumult of the parental soul. The child is still here.During the doctors’ morning visit, no change shouldmake itself perceptible.

The final stage child does not need doctors withsheer professionalism and rigid behaviour. A doctor ofthis delineation could become a microbiologist, a den-tist, an obstetrician or whatever else.

Here we are dealing with a child leaving us. In sucha case the contact of parent and the child with thedoctor is on an everyday basis. Here a relationship ofdependability is being built. The doctor’s presence willplay a catalytic part in the final stage quality of life.

The doctor’s presence will assume a place of domi-nance in the life of the whole family.

At this stage the parent has a complete need ofassertion that he has done whatever was correct andprecise. The future life of the parent and the family asa whole, will depend greatly on the doctor’s stanceand the assurances he extends.

The oncologists, hematologists and pediatriciansshould follow special courses in psychology, most ofall they ought to possess inborn humane traits.

Pain

Pain is the most basic element in defining this peri-od of time. If the child is in pain, everything the parentendeavors to build comes to pieces. The distressedparent has by now learnt to accept everything, eventhe approaching end. But he is incapable of sustaininghis child’s being in pain. All forces, gathered with somuch effort so far, are abandoning him. Allow me torefer particularly to the issue of pain in stressing thepoint that science and the medical staff have not asyet focused their interest thereon as much as theyought to, and the cases of children suffering pain areof a quite large number. It is, at the very least, unac-ceptable in our times to let children suffer pain. Thescience of the 21st century owes these children atleast such a relief.

Siblings

Siblings, amidst an avalanche of events, remainbystanders of the evolving situation around them,sometimes in silence, sometimes reacting and creatingproblems, in order to attract our attention, since thereis no other way to achieve it.

We parents in our anguish, forget that all childrenhave the same rights. We inflict on them, without our

ties”. Hope is reluctant to follow him anymore. He isnow face to face with the truth. He himself, the possi-bilities and all doors closed. The events, the medicalexaminations, the tomographies break him to pieces.Belief in a better outcome, which hitherto was his liv-ing breath of air, has now abandoned him.

He has to relocate his attitude towards the enemy.The enemy is in the advance, the battle, however, hasto be continued. A change of tactic is required. Themoment is crucial. He either:

� Conforms and cooperates with the doctors or hereacts and considers them responsible for therelapse

� He sometimes visits the various medical centersoverseas

� He often runs to religion and visits one monasteryafter the other

� He also turns to and seeks other methods of ther-apies and remedies

� But there are also those who leave the battle andsimply expect the inevitable

Though nature does not provide everybody with thesame potential, the same amount of knowledge, orgive the same opportunities, it expects from everybodythe same capabilities, when it allows everybody to facethe same problem and to feel the same pain.

After the relapse

The presence of our child, after the consciousacceptance that this will be ”temporary” becomes par-ticularly valuable. It suddenly assumes overwhelmingproportions and, as long as the parent lives in the com-pany of his child, he feels so overflowing of his pres-ence, as no parent of a healthy child would ever feel.

Within this very short lapse of time, the parent willconcentrate the events, feelings and experiences of awhole lifetime. Every moment is special, every hour isof importance.

These are the moments, these are the hours, whichare to become our remembrance to fill our lives everafter and to keep our child alive in the inner self for ever.

Our children, being transformed within this periodof time into little ”Gods” in our hands, enrich our lifewith feelings unknown to us up to this moment. Joysto be experienced at this stage of our life, which Iwould characterize as a ”waiting” stage, are unique.

At this period of time we sip insatiably the presenceof our children, we make every moment worth living,we stand abreast, we assist.

Our existence on earth has acquired a decisive ele-ment, a clear destination and meaning.

We stop the lapse of time. Because at this stage wecan now prolong the days, extend the hours, live nowonly in the present, leaving the dim future lingeringthereafter, whenever it comes.

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knowing it, fears, guilt, remorse, fatigue and misery.Their tender childhood years will always bear themarks of the era and the impact thereon, whether pos-itive or negative, will be unavoidable. The best way toface the situation is to involve them in our ”problem”.But which parent can think and act rationally underthe burden of so many feelings and events?

What we all should and can do at the very least, is,I believe, remember now and then to ask to be excusedby our other children and request their understandingfor our partial behavior, while at the same time provid-ing the necessary explanations to relieve them of theirremorse and fears.

At least that is what I tried to do a very few times ofcourse, and I believe that today I have a son with nopsychological problems, while establishing a strongand tight relationship with him.

Grandparents, uncles and aunts, close friends

Pain for 24 hours a day is just too much for us par-ents. However, the persons close to us suffer with ustoo and their assistance is valuable to us. Their beingpresent at the threshold of our pain and lending us ashoulder for our tears make some of us – I wish I couldsay all of us – luckier than others.

Wider environment, neighbors, far relatives

and friends

Communication with all these groups of personsmay gather for the parents assertions and experiencesconcerning human nature, which few professionalscholars may proclaim to possess.

Fears denude the wider human environment and theparent, and the child as well, are often compelled toface pity rather than love, curiosity than interest, mer-cilessness and indifference than assistance, sometimeseven racism.

It is better for the wider environment to remain”wide”. Any effort at conciliation will prove to be atleast ”false” in my opinion, creating rather than solv-ing problems for the parents and the child alike.

The School

It may be the case that psychologists recommend atthis stage – depending on the condition of course, thatthe physical state of the child still allows it - a returnto school.

The child must be free at least to follow its wishes,without intrusions.

The child is entitled to determine its life and dowhat it really wishes to do. If however, the childdecides to follow classes at school, the parent is calledto face additional problems regarding the smoothrehabilitation of the child at school and the problemsof illnesses, low leukocytes etc.

Home Care

The child’s right to remain within its ”private quar-ters” during the final stage period is sacred. The child,if it so wishes, may at this stage have required allmedical care at home. It would be ideal for a unit toexist constituting doctors, paramedical personnel andpsychologists to visit and care for the child at home.

The parents will then be able to offer all their lovingcare to the child and enjoy moments of peace andserenity alone with their child, away from the hospi-tal’s unease, which distract their attention.

Financial contentedness

The parent at this stage is not capable of working,while the child’s needs, as well as those of the family,are increasing.

His wish to provide every possible comfort and thebest living conditions that exist to his child is impres-sively moving.

If there is no money at hand or other ways of pro-viding a decent way of life to the child at this finalstage, the parent undertakes an additional burden.When not in a position to meet the child’s require-ments, he is brought face to face with sentiments ofabsolute distress.

The last days

The parents have now only one point of interest.Wars, fires, revolutions, all those events characterizedby other people as ”news” do not reach his ears. Hisother children do not reach his ears. His other childrendo not persist in his thoughts, the remaining familyhas no need of him.

At this period of time, this child is here. He desper-ately endeavors to improve the living conditions. Toalleviate pain from the child, if there is any, to makethe child smile, to prolong lifetime.

He reacts by shouting, crying or staying mute. Hehas gone so far as to be capable of living by allowingonly part of his head and mind to operate. Histhoughts are full of what he wishes to do or is able todo. And he persists. Human nature has by now sum-moned all the defense mechanisms at its disposalbecause, in the end, one can endure to the extent oneis required to endure.

The final moment

The last moment is the beginning of another, theaftermath of a struggle, which will follow the parenttill his own final moment.

The aftermath

The loss is ours, the grief is ours, the child is ours.Time has come for us to mourn as long as we wish to.Time has come for us to accept that we suffer. Now,after a long time, we have ”the time” to cry. The time

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has come for us to be free, free to mourn and grieve,to bleed, to dissolve the material part of ourselves ofeffort and pain.

The assistance extended to us by our close friendsand relatives should bear the essence of our ownrequirements and not that of their personal beliefs asto what would be right or wrong for us.

We sometimes cry as much as we can. Sometimeswe stay still, confined to our inner self and sometimeswe engage in endless talk. The idea of a second life,the continuation of man’s spiritual nature, sustains us.Certain dreams, mixed with fantasies, between awak-eness and sleep, provide us with a task.

From one moment to the next, we find ourselveswith empty hands. The endless days and nights overthe patient’s pillow are left vacant. We do not preparedinner, we do not wash his clothes, we do not givemedication on time and our mind does not have tocope any more with leukocytes and red blood cells forthe day. Our continuous effort to find more time hasno response, no result. Our everyday time hasswitched from being too short to being endless. Ourremaining children do not bother us. Our family is sodistant.

Time

”Time” brought us nearer to the end, and the termi-nating hour.

Time snatched us from our own mother’s arms,made parents out of us, deprived us of our childrenand we now await for it to lay out our life in thefuture and heal our traumas.

Today, after many years

My son, my husband and myself, the family, friends,work at the parents association for children with can-cer, shopping, summer holidays etc. – this is all verynormal …

But also:

Moments of loneliness, meditation and remem-brances. Moments when the key of the heart opensthe door letting reminiscences overflow as a torrentinto every corner of my life. Moments when I re-liveeverything I have most lovingly treasured and keptdearly in the depths of my soul and I emerge fromthere renewed and ready to go forth.

Today, 18 years after my Alexandra passed away, Iconsider myself lucky for having even for only sixyears filled my hands with this child and offered to hermy adoration, this child, which brought to my life withso many never before experienced and deeply movingfeelings, and taught us what braveness and dignitymeans.

Maria TrifonidisFloga

Parent Association for Children with CancerAthens, Greece

A n n o u n c e m e n t s

27 - 29 May 2004International Meeting in ValenciaOrganized by ASPANIONWith a program for parents and psychosocialstaff on May 29.On May 27 and 28 there will be the official Ten-Year-Celebration with a reception in the TownHall and some other activities. For more detailedinformation please contact:ASPANION Plaza Pablo Picasso, 9-3°D46015 ValenciaTel. +34 963 47-1300 / Fax: +34 963 48-2754Email: [email protected]

25 - 28 August 20047th World Congress of Psycho-Oncology

in CopenhagenTheme: ”Understanding Diversities –Development of Strategies for PsychosocialOncology” Hosted by the International Psychology Society For more information visit: www.ipos2004.dk

16 - 19 September 2004

ICCCPO General Assembly,

Oslo, NorwayA parent program as well asa program for survivors willbe organized along with theSIOP meeting. For details contact:[email protected] Please visit also the website: www.icccpo.org

36th Congress of International Society of

Paediatric Oncology

SIOP 2004, in Oslo, Norway

For more information please contact:Congrex Holland BVP.O. Box 3021000 Amsterdam, The Netherlandswww.congrex.nlwww.siop.nl

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Marina NovitskayaArt and handicrafts by the hands of children with cancer:

Art therapy and real prospects for the future.

We Ukrainian parents andvolunteers can do so littlefor our children with cancer.In our country, sufferingfrom crisis, almost all of ouractivity is focused onsearching for financial sup-port to give the child every-thing necessary for its treat-ment.

Our rehabilitation andeducation programs are, soto speak, still in the embryostage. But we never forget

that the emotional condition of the child is one of themost important components of the treatment.

The doctors who treat our children constantlyremind us of that. They prescribe the small patients”vitamin J” (joy). The doctors allow actors and clownsto attend our department. Sometimes the clown iseven allowed to visit the sterile box or the intensivetherapy ward.

When the child with cancer is admitted to the hos-pital, the first thing the anxious and terrified parentsthink of is to get the child busy with pencils, paintsand handicrafts-any kind of creative art.

Such a decision has a lot of advantages from theparents’ point of view:

� this kind of activity is usual practice in all institu-tions involved in working with children;

� any adult is able to make something of that kindand teach the child as well;

� this activity does not demand much expenditure;� at least the child can do that alone without any-

body’s help, as he or she might with reading.

This is the way most parents think. That’s why eachchild admitted into hospital has a notebook, an album,a pen, pencils and fountain pens amongst his or herthings. Sometimes there’s a set of colored paper orseveral colors of beads. The parents can not evenimagine how right they are, placing such strong hopeson handicrafts and creative art as a means of supportin the disease.

We can divide the whole art-therapy into threeSTAGES, though the division will be a bit hypothetical.In fact, there is no strict border between the stagesand the point at which the child goes from one stageto another is very peculiar to each child. Moreover, noteach child goes through all stages as must.

The first stage of creative art activity has the clear-est aim: to fill the child’s free time, to save him or herfrom dullness and boredom, to draw away the child’sthoughts about death.

Our organization works for the department of onco-hematology, which admits children for treatment fromall over Crimea. Crimea is the resort region of theUkraine. The area of the Crimean peninsula equals thearea of Belgium or Albania, and is twice as big asIsrael. I give these figures here to show the followingsituation: the children with oncological diseases spendthe greater part of their treatment -and this is from 6months to a year - in hospital. Most parents live in dis-tant regions of Crimea but even those who reside inthe administrative center of Crimea where the hospitalis located, have no opportunity to transport the sickchild safely to their home or are not able to providethe child with the necessary safe conditions at home,especially after they have received a course ofchemotherapy.

When the child has problems in the course of thechemotherapy, he or she has no opportunity to studythe school subjects without the help of parent orteacher. Even if child’s state of health allows him tostudy, this is impossible given the hospital conditions.There is no educational center here; the children haveno opportunity to obtain correspondence education aswell.

During the first weeks at the hospital, it is simply amust to find some activity for their hands. I know thisfor sure due to my own experience. During the firsttwo months of treatment, my son and I studied thor-oughly the whole book of origami, and we could havemade thousands of paper cranes, but it was necessaryto find more difficult models and levels to draw awaythe dark thoughts.

A child with cancer undergoes the severest psycho-logical trauma which is caused by a set of factors, andwe cannot save the child from the impact of these fac-tors.

� First of all, there is the astonishing informationabout the disease, which is life threatening.

� Secondly, the separation from the child’s relativesand friends for a long period of several months.

� Thirdly, the tough course of treatment with itspainful procedures and consequent loss of hair.

� Fourthly, children see the suffering of otherpatients, and very often learn of their death.

But we can help the sick children make their fears,emotions and hopes visible. It is common knowledge

that a picture drawn by a child can highlight his or herproblems, on the one hand and on the other it canbecome a method of psychotherapeutic treatment.

This is the great field of research by psychologistsand psychotherapists, by the way, which is almostunreal to us: there are no funds to pay specialists ofthat kind, and there is no volunteer psychologist hereup to now.

Nevertheless, a lot of patterns are obvious even atfirst sight.

A newcomer to the department is never deliberatelyinvolved in the work; the process of art-therapy beginswhen the child watches other children work. But cre-ative art is very contagious; all new artists are attract-ed by the process, willy-nilly. The child is never bored;there is no time for that.

During the first days or even months, the child canonly, as a rule, use one dark color to draw its pictures.These pictures usually show something threatening.For example, July Donets, a verycalm and reserved girl, drew animalswith big fangs, claws and drops ofblood. But when she was dischargedto return home from the hospital,she presented the teacher with apicture of a tiger, no fangs andclaws showing, all soft and fluffylike a cat.

The teacher analyzed the picturesof Volodya Stogny, an orphan, andnoticed the connection between theattacks of aggressivity and the pic-tures. When the attack was close,Volodya painted the abstract picturein aggressive bright colors.

The pictures of Elena (Alyonka) Kornilova, age 4,need a separate world. This child had been treated forleukemia for almost all of her short life. She had fallenill when she was one, and after two years of treatmentshe had had a relapse. Ten months later, in hospital,Alyonka had a third relapse, which led to her death.

Alyonka’s pictures repeated the only motive: horri-ble black sun, which looked like a jellyfish or wheel,spreading the tentacle-rays towards a small helplessfigure (teddy-bear, small ship...) - and a small, but verybright sun, which saves the small figure and takes itaside of the black monster. One of her pictures had theblack sun on the sea background at the bottom of thelist, and the bright one shining in the sky. The girl cap-tioned the picture with these two lines: ”I don’t likethe black sun, I go for a walk with the red one.” Thegirl gave this comment: ”The black sun is a bad one,that’s why I’ve thrown it into the water, let it sink.”

There is no black sun in Alyonka’s last picture. Noimages in fountain pen, just color-abstract composi-tions, fine and delicate aquarelles of calm and harmo-nious shapes…

A special group is formed with pictures on medicaltopics. Children usually draw their doctors. There areseveral such portraits on the walls of the doctor’sroom, carefully pinned near each doctor’s place.

Certainly the teacher directs the creative activity ofthe children, but with all possible tactfulness andwithout pressure.

The teacher offers the children the chance to pre-pare happy pictures for any holiday, showing thechild’s family on the picture- and of course the child issupplied with the brightest and the most joyful pencilsand paints. Once the patients of the department weregiven the theme: I am back home! The enthusiasm thechildren showed needs no words! To the current sur-vivor’s day, the entire department (children, parents,doctors, and led by the teacher) created a huge poster:

blue sky, a sun, white clouds, flyingbirds, green grass and blue sea. Theartists made this picture, dippingtheir hands into the paint andstamping their hands on the whitepaper. All the images were made bytheir handprints. But unfortunatelyone of the small artists experiencedan allergic reaction to the paint, herhand got all inflamed. That’s whythe teacher never applied thismethod of painting again.

But when each child createssomething without any help, choos-ing the topics itself, the pictures orhandicrafts turn out to be jolly andfestive. They are full of suns, rain-

bows, blooming trees and blossoms, butterflies, allkinds of animals and very often waves of the sea. Thenames of the pictures speak for themselves: ”Mydream”, ”Rainbow”, ”Spring in Cosmos”, ”MerryClown”, ”Sunrise in Crimea”, ”We are all going to builda new house”. Children with leukemia drawing holi-days, they are happy in this life, they are confidentthat they will overcome this disease.

The personality of the creative art teacher is ofgreat importance through all three stages of art thera-py. During the work with children, the teacher not onlyteaches them art, but also works as a psychologist.

Skilful teachers usually involve different kinds ofcreative art activities: painting and drawing, embroi-dery, handicrafts with beads, application, origami andthree-dimensional applications. Materials of quite dif-ferent kinds are used in creative art activities andmatch perfectly.

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The staff list in theonco-hematologicaldepartment includes aposition for a teacher.For five years, OlgaPavlyuchenko workedwith our children. Theresults of her efforts:our children’s artworkhas been successfully

shown at various exhibitions, the high quality of thepictures and their expressiveness. She had a great task- to teach the children to overcome different crisisconditions and to obtain inside support with the helpof creative art. Olga Pavlyuchenko has kindly grantedmany important observations and given a factualmaterial of this report. Unfortunately, the state of herhealth does not allow her to work at the departmentany longer, but we strongly appreciate her contribu-tion to the psychological health and education of ourchildren.

The second stage of art therapy begins when thechild needs something more than just drawing andpainting, splashing out his or her emotions, moods andproblems. The child feels that it is not enough for himthat his works are carefully kept by his teacher or hisparents and doctors. The child feels it boring to com-pare his works with the works of other sick children.

The second stage of art therapy begins when thechild with onco-disease wants to compare his cre-ations with the works of healthy children.

It is critical that an adult should be with the child atthat moment – a parent, social worker, teacher, or vol-unteer - a person who can organize the event.

The first stage of art therapy has solved the problemof supporting the spiritual side of the child; it hasgiven the child a support in coexistence with the seri-ous disease and lethal danger. But the works made inthe hospital fulfill one more aim - to become the sickchild’s ambassador to the normal world that surroundstheir hospital, to let the children’s works show thepeople and the world the reflection of their souls.

And now, from that moment, emotional therapytakes on the features of rehabilitation. Rehabilitationis included and aimed not only at supporting the spiritat this moment in time, but also in the future.

� First, a child, whose works take part in competi-tions and exhibitions, gets used to the thoughtthat his or her life is still usual, and that it is nor-mal that it lasts nevertheless.It is twice as good if the competition or exhibitiontakes place in the kindergarten or school whichthe child attended before the disease. In this casethe child becomes confident that he or she is stilltaking part in the school life as well as the other

healthy children do. Usually there is no such com-petition, the child simply exchanges pictures withhis former classmates, keeping the communicationwith them from above the hospital walls, andreceiving his or her classmates’ support.

� Second, the emotional charge of that work is sohigh that usually they take the first place awardsor get the largest number of appreciation -thespectators’ love award. Three years in a row, theworks of the onco-hematology departmentpatients obtained the Grand Prize of the Festivalof Disabled Children’s Art. In 2001 all three prizesof laureates were awarded to our children. Theseare the winners: Misha Norenko (ALL,14), MashaGalaburda (ALL,11), Denis Alexeev (AML,14), OlyaBaraovskaya (ALL,13), and Volodya Rodionov(ALL,10).So, the child’s self-esteem grows a lot, because herealizes that he or she is not only worse thanother children, but has in some aspects becomemuch stronger and better. That’s why we usually try to give the child somematerial evidence of his or her victory or even par-ticipation in the competition - a diploma, a prizeor photos from the exhibition.

� Third, the quality of the children’s artwork is veryhigh, so it is possible to organize auctions likeexhibitions or exhibitions with charitable aims.Exhibitions of that kind are regularly held in theadministrative center of Crimea, Simferopol. Therewere some exhibitions in the capitol of theUkraine, Kiev, and abroad- in the Netherlands andin the USA as well. Now we are planning toorganize such exhibitions in Canada and Russia.All the money obtained at these exhibitions isspent on the purchase of new material for art andhandicrafts activity, but the main part of themoney is spent on medication for some individualcases or for the whole department. Childrenbecome conscious that their works are not onlyhigh in value, but can also bring real money andbe a financial support for their parents. Thesethoughts give the children the possibility to beproud of themselves and make them seek newexpressive means and fresh ideas and to fly higherand higher.

Now the third stage begins - creative art is not onlyemotional therapy, not only the rehabilitation, but real,steady hope - not hope, but confidence! That this real,special child with the diagnosis of ”cancer” has a realfuture – a future as a valuable, even more useful mem-ber of society. In aspiring to new achievements, mas-tering their creative talents, in search of new artisticdecisions, our children acquire the skills of their futureprofessions. The recovery means not only the clinicalstate, but also returning to the previous style of life.

Unfortunately, in our country we see - especiallyfrom the side of the state - strong disregard and neg-lect of sick and disabled people. In such circumstances,our children seem to have very low status. But weobserve quite the opposite situation when the childrenreturn home: their status increases. Such childrenbecome popular and take the leading place in differentchild communities. They continue to take part in com-petitions and continue to win them; and consequentlythey start to teach other children not only their skillsin creative art, but their new knowledge about realvalues in life, which they have learned from their ownexperience.

During the treatment, our children acquire enoughdifferent skills to continue their world at home, as wellas to enrich their knowledge. They become confidentin themselves and their powers, and continue to helptheir parents, producing creative art work for sale.

Volodya Rodionov (now 12) makes competitionswith sea shells and pebbles, makes applications andembroidery.

Masha Demchuk (12, now undergoing treatment)-creates wonderful bead bouquets and compositionswith the help of her mother.

Olga Bavarovskaya (15)- together with her motherdoes embroidery; almost all of the doctors have herembroidery compositions. Unfortunately, Olga has had

a relapse and has been preparing for a bone-marrowtransfusion in Kiev.

We need volunteers - men of art, we need thembadly. We need people who can constantly and profes-sionally teach our children creative art. We want ourchildren to work as the children in Moscow regionalhospital do, where the department of onco-hematol-ogy and transplantation of kidneys is supervised by thevolunteer group, organized by Reverend AlexanderMen.

If something non-material is invested, the skills andkindness of the teacher or the volunteer for example,the children can pay back the investment many timesover.

Joy, admiration from the world, hope - we can seeeverything in the work of our children! Our children,who are considered by many people as incurably ill,can give us such positive energy that we feel able tomake our gloomy world bright, taking their emotionsas paints.

They usually bring their creative art work as a pres-ent to their doctors. We write poems and songs aswell, and sometimes even books…

Marina NovitskayaCo-coordinator of raising awareness activity

Mercy Mission ”Overcoming”, UkraineThis report was presented

at the recent ICCCPO meeting at Barretstown (2003)

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The Chemo-Kasper booklet

is available in many

languages.

Visit our website to find

your language.

www.icccpo.org

From November 4th to 6th, eight people from ourorganization traveled to Finland and Sweden. For thechildren that was a big adventure: a trip by car fromSt. Petersburg to Helsinki and then by sea fromHelsinki to Stockholm. Everyone was on the ferry forthe first time. The children studied the 11 floors of theferry, bought souvenirs in the shops, admired the view

from the deck. Stockholm has sur-prised all of us by its beauty and sin-gularity. We walked around the citycenter. The children took photos of themost interesting places. We had timeto visit the museum of Astrid Lindgrenand the Skanska Muset.

We want to say many thanks to theorganization Langinkosken seurakuntaand personally to Pentti Holi for thehelp and attention!

Olga SemenovaCo-ordinator

NGO ”Children and parents against cancer”Saint-Petersburg, Russia

In Karlson’s world

Hurrah! I traveled to Sweden, more exactly, toStockholm. On the 4th of November, early in themorning, all of our group ”Children and ParentsAgainst Cancer” went to Finland. Though it took a longtime it was not dull at all on the way, because weknew each other. When we arrived at the Church inFinland we drank hot tea and got onto the bus thattook us to Helsinki in 2-3 hours. The bus stopped atthe sea port, near two enormous ferryboats. One ofthem was ours. Then we received keys for our cabins.They were not simply keys, but special magnetic cards.Four people slept in each cabin, which had a showerand a toilet.

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Dear friends,

In the spirit of the recent Christmas bliss, a stepbefore New Year’s Day, I would like to wish you hap-piness, good health and success in the coming year.

Talking about nice matters, the presentation ofthe booklet we translated from the German versionwas a significant event in the oncology ward of theChildren’s hospital in Skopje. In the presence of par-ents, members of medical staff and friends theleader of department, Prof. Muratovska, spoke wellof the initiative. She said that through the writtenword the everyday experiences on the ward can be

made easier.The simple language used for explainingthe disease and its treatment makes this book readilyacceptable by the parents. The 200 copies of thisbooklet were given by our parent association to thedepartment of oncology, with the basic aim to makethis book available to all parents confronted with theproblem of childhood cancer.

With deep hope that our collaboration will go on,I send my best wishes to you.

Natsha Kotlar-Trajkova Skopje, Macedonia

We crossed the Baltic Sea. Our ferry-boat had 11floors! There were shops, playrooms for children’sgames, machine cabins, plenty of everything. Wearrived at Stockholm the next morning and walked tothe center of the city, to the King’s Palace. To be frank,we didn’t see the King and the Queen, but we saw theroyal guard - royal guardsmen. Then we strolledaround the streets of the Old City and went to visit themuseum of Astrid Lindgren. There were so many inter-esting things on display, though the museum wasrather small. After we had seen one half of the muse-um, we came to a train and went aboard. When thetrain started moving we heard some sounds in the cor-ners of our car. We looked up and saw little figures,hiding up there, talking about something. They werefrom one of the fairytales of Lindgren. So we watchedand enjoyed several fairytales of this Swedish writer:Karlson, Emil from Leneberge, etc. It was cool!

Then we returned back to our ferry-boat, crossingthe Old City again. We returned back home by thesame way. When we were back home it was November6th. I noticed one interesting thing about time in allthose three countries: When it is 20.00 in Russia, it is19.00 in Finland and it is 18.00 in Sweden. I liked thistrip so much.

Pavel Astashkevitch12 years old, Saint-Petersburg, Russia

Our trip to Stockholm

Conference for families and patients

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Our traditional annual conference dedicated to theproblems of cancer children and their families in Sumyregion ”You are not alone” was held on the 5th ofDecember, 2003.

Among the participants of the conference werecancer children, their parents and relatives, journalists,doctors, nurses, representatives of Sumy local adminis-tration - all who are not indifferent to the problem.

The main target of the conference was to push theinterests of cancer children and their families toattract the attention of the community to their prob-lems. The participants gota chance to learn moreabout cancer. The familiesof the cancer children dis-covered that they are notalone and there are otherswho experience some ofthe same pain, there arepeople who support theirchildren, give cancer chil-dren the chance for life. Alot of words of gratitudewere addressed to thesponsor of the project”Children’s pain” AustrianKinder-Krebs-Hilfe - an only organisation which sup-ports this life-asserting programme and made cancerchildren appropriate treatment accessible.

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Two interesting websites for survivors:

www.sac-ados.fr.fm

www.jscforum.net

The atmosphere of the conference was very sincereand emotional. Long-term survivors, very beautifulyoung boys and girls, talked about their experiencesand shared their wisdom with others. The results wereamazing: many cancer children and their familiesbecame more optimistic and left the conference withthe feeling that they are not alone!

Svetlana Shut Charitable fund ”Viden”.

!

Leigh A. Woznick and Carol D. Goodheart:

Living With Childhood CancerA practical Guide to help Families Cope

Like a natural disaster, the diagnosis that your childhas cancer can leave you and your family feeling help-less …

� How do you explain the disease to the child andhis or her siblings?

� How can you communicate your child’s needs tohospital staff?

� What are the best ways to reduce the physicalside effects and emotional distress of treatment?

� How will you, you child, and the rest of yourfamily cope, and what can you do to help?

� When and where do you find good psychologicalhelp for your child or your family?

� How do you manage financial and school issues?� How can you foster your child’s development and

self-esteem?

These and more questions are raised and answeredin this very comprehensive book, which is a valuablesource of information – equipped with a long list ofresources (literature as well as websites) – for familiesas well as care givers.

Gerlind Bode

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Finding a way to help as much as we can

Washington: American Psychological Association,2002 (ISBN 1-55798-872-2, $19.95)

Starting with big greetings from Bosnia andHerzegovina and the Association ”The heart for thekids with cancer in FBiH” (Srce za djecu koja boluju odraka u FBiH) we would like to inform you about theforthcoming events here in Bosnia and Herzegovinawith regard to the ICCD day 2004. Namely, in coopera-tion with the Chamber of Economy of FBIH we arepreparing a great Fashion show in the Grand Hotel inSarajevo. At the same time we will have the presenta-tion of our work (we are a very young Association -founded in April 2003 with the help of our ”twin asso-ciation” from Luxemburg – thanks to Marie MartheBruck Clees and Francois Schoentgen). We will showour brochures, calendars, greeting cards, etc. andexpect a lot of people from the diplomatic core(ambassadors in BiH) will come as well. The represen-tative of BiH, Mr. Paddy Ashdown, supports this event.There will also be entertainment (such as music) andwe are expecting to inform the public in Bosnia andHerzegovina about the problems all of us are facing inthe fight for the lives of cancer sick children in ourcountry.

You can find more about the association at:http://srcezadjecu.freewebspace.com

Invited by NURDOR SCG (National parentAssociation of cancer sick children of Srbija andMontenegro), our delegation will be visiting Belgradewith the following goals:

1. Finding possibilities to increasing the cooperationwith the clinics in Sarajevo and Belgrade.

2. Strengthening the already existing cooperationwith the Srbija and Montenegro Association.

Please, consider this as the letter of gratitude forbecoming a member of ICCCPO at the annual meetingin Dublin and in the same time to show that we are allworking to the same end – to find the way to help ourlittle fighters as much as we can. Once upon a time wewere kids. We are trying to help them to help us inbecoming better people in society.

Sabahudin HadzialicMamber of the Supervision board

”Srce za djecu koja boluju od raka u FBiH”Sarajevo

Bosnia and Herzegovina

Boo

ks

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Executive CommitteeSimon Lala, Chair15 Jack Conway Lane (Box 76442)Manukau City, New ZealandTel.: +64(9) 575-7785, Fax: +64 (9) 262-2132e-mail: [email protected]

Geoff Thaxter, Vice-chairman1 Betjeman Close, CoulsdonSurrey, CR5 2LU, EnglandTel.: +44 1737 555411e-mail: [email protected]

Christine Wandzura, Secretary609 14th Street, NW, Suite 205Calgary, Alberta T2N 2A1, CanadaTel. +1 (403) 216-9210, Fax +1 (403) 216-9215e-mail: [email protected]

Julian Cutland, Treasurer50 Dawn Drive, Northcliff2195 Johannesburg, South AfricaTel.: +27 (11) 678-3803, Fax: +27 (11) 678-4863e-mail: [email protected]

Irina BanPalmoticeva 25a St.11000 BelgradeSerbia and MontenegroTel.: +381 113246169, Fax: +381 113291219e-mail: [email protected] and [email protected]

Mark CheslerSociology Department, University of Michigan1225 South University (room 248)Ann Arbor, MI 48104-2590, U.S.A.Tel.: +1 (734) 647-3654, Fax: +1 (734) 763-6887e-mail: [email protected]

Edith GrynszpancholcMansilla 31251425 Buenos Aires, ArgentinaTel.: - Fax: 5411 4825 5333e-mail: [email protected]

Marianne Naafs-WilstraSchouwstede 2d3431 JB Nieuwegein, The NetherlandsTel.: +31 (30)2422944, Fax: +31 (30)2422945e-mail: [email protected]

Ira Soelistyoc/o Rumah Sakit Kanker Dharmais,Jln. Letjen. S.Parman kav. 84-86, Slipi,Jakarta 11420, IndonesiaTel.: 62-21-5681612 or 62-21-5681570 ext. 2030Fax: 62-21-5681612/7547745e-mail: [email protected]

Secretariat:c/o VOKK, Schouwstede 2 d3431 JB Nieuwegein, The NetherlandsTel.: +31 (30) 2422944, Fax: +31 (30) 2422945e-mail: [email protected]

Members of other ICCCPO committees:

Gerlind Bode (newsletter)Joachimstraße 2053113 Bonn, GermanyTel: + 49 (228) 9139430, Fax: +49 (228) 9139433e-mail: [email protected]

Pia Bonini Serrafero (newsletter)8° Strada 96, San Felice1 Segrate MI 20090, ItalyTel: +390 (2) 7533387, Fax: 390 (2) 7533387e-mail: [email protected]

Sadie Cutland (PODC)50 Dawn Drive, Northcliff2195 Johannesburg, South AfricaTel.: +27 (11) 678-3803, Fax: +27 (11) 678-4863e-mail: [email protected]

Mokhtar el HarrasAssociation l’AvenirRoute de Qued Akrach-Hay 11Angle Rue Bani Jadr et BaniRabat, MoroccoTel.: - Fax: +212 (37) 713357e-mail: [email protected]

Documents

Icccpo Newsletter 2004-1