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ICCCPOInternational Confederation of Childhood Cancer Parent Organzations Vol. 10/No. 2, 2003

C o n t e n t s

International ChildhoodCancer Day 2003

Parent Voice in Childhood Cancer 4

Organisation Issues and Models for Parent Groups 6

Igor’s battle 10

Meditation on impending death 13

Book reports 16

Announcements 17

Program of ICCCPO Meeting 18

Executive Committee 20

ICCCPO Newsletter

Summer 2003

Volume 10, No. 2

Published three times

per year

Editorial Staff:

Gerlind Bode

Pia Bonini

Sue Grant

Marianne Naafs-

Wilstra

Jacqueline Ouchakoff

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.0

This issue of the newsletter will be distributedshortly before the General Assembly meeting inIreland (at Barretstown Castle). You will find theprogram included here and might take it withyou and we hope to see many of you at thismeeting. Please note that there is again a meet-ing for survivors scheduled along with the ICC-CPO program.

With this issue we are sending you a package ofinteresting articles on a variety of topics. We hopeyou find much of interest for you. We would also liketo encourage you all to send us your own contribu-tions: articles, reports, bookreviews, poems, pictures,letters, announcements – anything you would like toshare with others or think important for othergroups. This potpourri of contributions adds color toour magazine and makes it special.

A few words by the editors

www.icccpo.org

With best greetings and wishes

Gerlind Bode(for the editorial board)

International Childhood Cancer Day 2003The second International Childhood Cancer Day

took place on 15th February. The event wasorganised by ICCCPO with the outstanding sup-port of Cancer Research UK.

38 countries took part this year raising aware-ness of the 250,000 children who get cancer

every year in the world. The event also raised an esti-mated $100,000 to support the work of parentorganisations around the world.

The official launch took place in London and wasattended by Marianne Naafs-Wilstra (ICCCPO Chair)and Sir Paul Nurse (Chief Executive of CancerResearch UK). Celebrities supporting the launch wereJoan Collins, Rachel Hunter and The Cheekie Girls.Tony Blair also endorsed the International Day at ameeting in Downing Street with ICCCPO and CancerResearch UK representatives.

In many countries parties and celebrations tookplace for children in hospitals. This proved to be agreat way to raise awareness and to make it a joyfulday for the children.

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ICCCPO · newsletter · no.2/2003

In Russia the pop groupRussian Size played for thechildren. In Italy a footballteam of cured youngstersplayed in a match to commem-orate the day. In Finland a pho-tograph exhibition of childrenwith cancer was launched andis now touring the country.

Many countries also heldmedia conferences and semi-

nars bringing together families, doctors and NGOsthat provide support. These conferences providedinformation about the needs of children with cancer,and the media with an opportunity to help raiseawareness.

A CD containing full details of events in each coun-try will be available in July and will be sent automati-cally to all ICCCPO member organisations. This isdesigned to share ideas between parent organisationsall over the world.

ICCCPO and Cancer Research UK are already mak-ing plans for international support on February 15th2004. Initial details will be announced at ICCCPO’sAnnual Conference in late September. In the mean-time, member organisations are encouraged to startplanning their own events to make this event evenbigger and better in 2004.

For more information contact Geoff Thaxter [email protected]

This year, International Childhood Cancer Day wascelebrated at the department of Pediatrics at thePostgraduate Institute of Medical Education andResearch (P.G.I) in Chandigarh on Saturday by SahaytaCancer Sahyog in collaboration with ICCCPO and can-cer Research U.K. A Painting Competition was orga-nized by Sahayta on 14th of Feb. in the PediatricOncology Department of the hospital to bring cheerinto the lives of children touched by cancer. The chil-dren made paintings portraying various moods ofchildhood. Free gifts were distributed to all children.We also had a support group from Vivek high Schoolin Chandigarh. These children painted on the theme“Cancer afflicted children need your friendship, sup-port and not pity.” They came up with beautiful ideas.The best message was “Your friendship can help themlive up.”

On the 15th of Feb. 2003 students of St. Stephen’sSchool did a rally to create cancer awareness amongresidents. Colorful balloons were let off in the air byvarious volunteers and students and we were joined byKanwal Thakur Singh, an Arjun award winner in sports.The motto of the rally was “empathies and not sympa-thies”. The rally was flagged off from the sector 17plaza by the Head of Oncology Division in the depart-ment of Pediatrics, AIIMS, Dr. L.S Arya, and was led byUT chief architect Renu Saigal, herself a survivor. Therally was received by the PGI Director, Dr. S.K Sharma,and School principal Harold Carver after it reached theAdvanced Pediatric Centre at PGI. A brief introduction

to the International Childhood Cancer Day was givenby the President of the Sahayta Cancer Sahyog, Mrs.Neelu Tuli. The function was compered by KanikaMohan a sibling of Nitya, a 13 year old leukemia sur-vivor. She has been featured on the website of CancerResearch, U.K and has also been featured in the mediarelease by ICCCPO with her message: “When the goinggets tough, tough gets going”.

The cake was cut by the Nitya Mohan on this occa-sion and a lamp of hope, empathy, courage was lit bythe director PGI. Sovenier was released by Dr. L.S Aryawhich contained paintings and drawings by childrentouched by cancer. It also had national and interna-tional messages for this day. Professor S.K Sharma, Dr.Arya and principal Harold Carver applauded the workdone by Shayta in India and extended their full sup-port to the organization. Prizes were distributed to thewinners of the Painting Competition. The report ofSahayta Vatsalya Sahyog was presented by the volun-teer Aradhana Mittal. After tea, a meeting of the doc-tors, Childhood survivor’s their parents and volunteersof Sahayta Cancer Sahyog was organized to sharetheir experiences. Dr. Marwah and Dr. L.S Aryaanswered the queries regarding childhood cancer. Itwas an informative interactive session. The functionwas concluded after that and it gave lots of support toparents and brought the cheer in the lives of our littleones. Words of thanks were proposed by Dr. AmitaTehran.

Neelu Tuli

ICCD 2003 in India

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ICCD in Indonesia

The ICCD in Indonesia went very successfully. Wehad many events, such as

� a hospital visit to the pediatric oncology ward,sponsored by McDonald’s and Unilever.

� a seminar for parents in Surabaya, where wehelped and encouraged the parents to start anorganisation. Approx. 100 parents attended.

� a One-Day-Course for young doctors/practitioners,nurses (with accreditation for practitioners). Thiswas in corporation with Dharmais Hospital,Jakarta, and the Faculty of Medicine, IndonesianUniversity as well as the doctors from our medicalteam. About 100 young doctors and nurses camefrom Jakarta and surroundings.

� a One-Day-Camp with children (out-patients) andtheir families (parents and siblings). This eventwas sponsored by CANCER RESEARCH UK andBOURAQ AIRLINES (local airline). We held thisevent at Bouraq Resort in the mountains. We hada drawing competition, dancing, singing, playingtogether and finally some time for parents toshare their views with the board of our founda-tion. One doctor and two nurses came along withus.

Fortunately Prof Dr. P.A. Voute (The Netherlands)could come from Surabaya where he was one ofthe speakers at the SIOP Course in February 2003.We had arranged hospital visits to the Generalhospital in Central Jakarta (Army hospital Dr.Gatot Subroto) and a hospital in southern Jakarta(Fatmawati hospital) for him.

Ira SoelistyoIndonesia

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Helen Jerram

Parent Voice in Childhood Cancer and Other Serious Health Conditions

Paper presented at the ICCCPO Conference, Porto, Portugal, September 2002

I also hoped that it might prove helpful to otherparents and put something back into the system.

In consultation with paediatricians and chargenurses at Starship Hospital and the Neurosurgicalward at Auckland Hospital, 40 parents managingchildhood cancers, cystic fibrosis, diabetes mellitus(IDDM), renal disease and haemophilia for some timewere interviewed. The Paediatric Coronary Care Unit atGreen Lane Hospital in Auckland and Parent SupportGroups were also informed of the research. Parentshad all indicated interest in hearing more about theresearch from the hospital.

I interviewed parents either at home, at the hospi-tal or at the Cancer Society’s motel where severalwere staying. I was interested in finding out just whatparents were having to manage on a daily basis. I wasalso keen to know whether they thought some sort ofintervention programme might be a helpful communi-ty resource, what sorts of things they felt might needto be in it and whether they might like to be involvedfurther in research. Parents were appreciative of thefact that I was a parent myself and had some under-standing of the sorts of things that they were goingthrough. I introduced myself as the mother of a youngman who had had a brain cancer some years before.Many of them enquired about how he was and whathe was now doing. They then proceeded to tell mehow their child’s illness had unfolded, how it hadaltered family life and what the situation was at thetime.

I include here most of the first parent narrativenoted verbatim when I met with this mother and herhusband, in the neurosurgical ward of AucklandHospital.

First Parent Narrative

Kept him home from school, eyes crossed, nothingelse, very healthy. After three days, went to doctor,he sent us straight to hospital to see specialist,that was on Friday, suddenly we had a life-threat-ening situation, he told us it might be a braintumour. We had to go to Auckland for a biopsy toconfirm it. We came up here the next day, Sunday.

Everything seems to have an overlay of unreality,still nothing seems real at all. I came up in theambulance, followed by Dad in the car, with onlythe clothes I was standing up in, found when Iarrived I had left one shoe behind! We had to ringour older son to tell him what was happening. He isvery worried about it all.

(This paper was presented at the ICCCPOConference, Porto, Portugal September 2002 byRebecca Jerram on behalf of the writer who wasunable to attend)

I recently completed my doctorate at the Universityof Auckland, at the Faculty of Medical and HealthSciences. My thesis was to do with serious child ill-ness, from the parent perspective. In collaborationwith other parents who had been managing their chil-dren’s health situation for some time, I developed astress and illness management programme called theStrong Parents- /Strong Children programme.

My motivation was an unanticipated illness diag-nosed some 20 years ago in our eldest son,Christopher. This life-threatening condition, revealedby CT Scan and eliminated by radiation treatment,was a pineal germinoma. This is a very rare and primi-tive cancer that arises from the germ cells at concep-tion. These cells are almost always discarded. Veryoccasionally they remain and turn malignant in ado-lescence. In Christopher’s case they had settled on hispineal gland and by the time he was 15 years or so,they had become a layer, like a carpet, creeping veryslowly over parts of his brain, in particular his pitu-itary gland, auditory and optic nerves. By the time weknew that there really was something ‘not quite right’,the cancer had caused quite a bit of damage.

My research was an attempt to make some sort ofsense out of the extraordinary events that have madean impact on our lives as a family and particularly forChris. At the time we knew the nature of the beastand that something could be done about it. The after-math of his condition and the resulting health, senso-ry and physical difficulties were things that still layahead.

From a parent’s perspective, the experience waslike no other that one would want to encounter inone’s lifetime. Threat to our young, or threat to theyoung of any species, highlights basic instincts fortheir survival, with little thought for ourselves! I waskeen to find out from parents what was involved inmanaging their child’s illness or health condition, on adaily basis, to see whether there was anything thatmight be helpful to other parents further down thetrack. I embarked on my research some ten years afterthe event. Chris had recovered, but our family hadexperienced something that not everyone has themisfortune to encounter. Doctoral study was my wayof trying to make sense out of what had happened! IC

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Son was still perky and well when we came up,he had a list of questions for the doctors. Then heseemed to get sick and was restless before theoperation, didn’t make any response even whenhaving his hair shaved! Since surgery he has barelyrecovered.

I can’t reveal my feelings, I have to keep a braveface for my son. He hasn’t woken up much morethan this since the operation, we came back to theward this morning, since then we’ve had very littleregular attention. I have a dreadful feeling thatthey are thinking of him as dead, I have a `poormother’ feeling.

At first no one was telling me anything, when Irealized that they were talking about my son, Imoved closer to hear. I knew nothing about oncolo-gy , we were given very little information, this is myfirst experience, I’d never heard about this .The biopsy has confirmed the diagnosis, and I’ve putmyself ‘on hold’, really, I’ve stopped eating, wash-ing, hardly slept at all, I can’t bear to leave his bed-side. I feel I’m fighting for my child all the time. Inow realize I need to ask all the questions I have toand see that I get answers, he needs me to speak forhim, to be his eyes and ears, and since I have beenhere on my own I’m realizing a sense of advocacy. We have no family in New Zealand, its difficult toexplain on toll calls, they are all very concerned,there’s no-one here to help, my husband has beenkeeping in touch with the family and that leavesme free to look after our son, concentrate on look-ing after him. My husband says we need to bestrong together. We have appreciated being able tobe with him in the Whanau at `Starship’ whilewaiting for the operation. My husband’s employer gave him three days offwork he stayed for the operation then went home,he’s back here to take us home tomorrow.We’re now in the second week since the operation,we return to our local hospital tomorrow. The outlook is uncertain.

The basic natural instinct of having to do all in ourpower, even when in a strange environment and hav-ing lost control over what is happening to our child, is,I believe, shown here very clearly. It is very clear justwhere her suddenly-altered priorities lie and a goodpicture is provided of the rude and sudden interruptionto normal life that is made by such a diagnosis.

After parents had given me their information, Iasked them if they could put a ranking from 1 to 3beside the pieces of information that I could see clear-ly belonged together – in ‘chunks’ if you like. This theydid, and their typed information was then checkedwith them a few days later, for accuracy.

It was quite apparent from all the parents inter-viewed, that, no matter what length of time hadelapsed, the moment of diagnosis, what had led up toit , the diagnosis itself and its impact, and how it had

been dealt with were still uppermost in their minds.Parents were able to recall their experience vividly andthe times since diagnosis varied between six monthsand 15 years.

The stresses that most parents had rated most high-ly for stress intensity went right across the illnesstypes. The most intense stresses were not just confinedto childhood cancer. The areas or periods in which themost intense stresses were felt were at the time lead-ing up to diagnosis, the time of diagnosis, seekinginformation, dealing with the treatment, and the dailymanagement of the whole situation. The potential forthreat to their child’s life and the constant care andon-going vigilance heightened the impact of thechanged child health status. Worry over the futurequality of their child’s life, seeing their child so sickand dealing with perceived effects on siblings werefurther areas of intense stress.

Most parents welcomed the idea of some sort ofintervention package or programme, many were keento be involved later on, depending on their child’shealth at the time and there were several aspects thatthey felt should be covered.

Requests for programme content included dealingwith the worry and anxiety, coping with everydaypracticalities of managing family and the illness, andfinding ways in which they could get the informationthat they felt they needed. Parents also wanted helpwith knowing how they could access some sort of edu-cational help and support if needed when their childreturned to school, and how to help their child, thesiblings and themselves deal with whatever might lieahead.

The parent voice came through in this first studyvery clearly. Parents spoke freely and many of themtold me that it was the first time that they had everreally talked about the whole experience. Many ofthem had had similar experiences although quite dif-ferent diagnoses. One other clear factor that came

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Rebecca Jerram, daughter of the author, presents paper at ICCCPO-meeting

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The role of parents is critical. As parents, we holdthe ‘ real world’ information on our children and thisinformation can be most helpful for clinicians, nursesand others working with our children to know.

Parent voice in serious child illness, including child-hood cancers, is a voice that needs to be heard, rightthere, alongside all the health professionals helpingtheir children. However, parent voice is not heard veryoften in the professional literature.

Empowered parents, able to advocate and con-tribute in a fully-informed manner is one of the bestways to see that our role is recognised and valued inthe best interests of our children.

The overriding impression that I was left with wasthat there are many, many parents managing situa-tions not unlike our own and all of them are doing thevery best that they could do, along with the healthprofessionals- and that is all that anyone can do!

The Strong Parents-/Strong Children Programmehas continued successfully at Starship Children’sHospital over the last two years. The aim is to trainother parents to run it elsewhere. With this in mind, acharitable trust - the Strong Parents-/Strong ChildrenFoundation has been registered to access funding forthe programme in Auckland and eventually through-out New Zealand.

For further information, contactHelen Jerram, Ph.D.

Registered Psychologist The Strong Parents- Strong Children Foundation

e-mail address: [email protected]

through with each of these narratives was the factthat all of these particular illnesses or health condi-tions are hard to diagnose. With many of the childrenwhose parents were involved in this first study,regardless of their illness, parents had had to makeseveral trips to their doctor before the more seriousnature of their child’s illness had been determined.Once it was apparent that something more than themore normal childhood illness was a possibility, refer-ral to hospital specialists had in most cases seenimmediate action being taken. The family doctor seesmany sick children pass through his or her surgery ona daily basis. If likened to horses galloping past thesurgery window, periodically there is one horse thatappears again and probably again. At that stage itbecomes apparent that this one may be in fact azebra, not a horse and more information is needed,perhaps another opinion. Occurrences of serious ill-nesses such as childhood cancer are fortunately notcommon occurrences, but the impact they have on thechild, their siblings and parents can have lifelongimplications. Some form of disability may result andplans by a young person may need to be re-visited,with family support and understanding.

When our children are admitted to hospital, itplunges us quite often into an alien world. Part ofcoping with all that serious child illness implies isunderstanding that there are very few things that willever be more difficult! It is challenging, by anyone’sbook

Julian Cutland and Simon Lala

Organisation Issues and Models for Childhood Cancer Parent Groups

These notes are based partly on discussions at aworkshop held at the ICCCPO Conference in Portoin September 2002, and also on the experiences ofvarious member organisations of ICCCPO overrecent years.

Introduction

Many parent groups start off as local supportgroups, often closely related to a specific PaediatricOncology treatment centre. They normally develop aclose working relationship with the hospital and thestaff there, and have their primary focus as the sup-port of the families who are treated at the centre. Ifthey do fund-raising, it is normally from the localcommunity, and is spent within the local area.

However, many groups have evolved from purelylocal activities to having a national presence, perhapsjoining with other regional parent groups to do so, andthis can sometimes be a difficult transition for groupsto make.

There are different “models” that can be adopted byparent organisations when they “go national”, andeach of them has advantages and potential problems.The aim of this note is to identify these models, andthe issues that may arise from them.

It is not the intention to be prescriptive as to whatthe “best” model should be. There are many variationsbetween countries, in terms of the medical care pro-vided, the social services available, and the legalframework in which parent groups operate. The com-bination of these makes it necessary for each group toadapt and organise itself to be best able to deliver onthe objectives that it sets out to achieve. There arehowever some basic ideas that a group should takeinto consideration when it decides to formalise it exis-tence.

This note is based on the experiences of some par-ent groups, and will hopefully be developed over timeas other ideas are contributed by different groups.

It is not intended to do morethan highlight some of theseactivities. For more information,please refer to the excellenthandbook “Your are not alone”,which is produced by theCandlelighters Childhood CancerFoundation in the USA (andwhich is given to all new mem-bers of ICCCPO).

Local groups:

As mentioned previously,these are normally focused within a geographic area,and often on a particular treatment centre. They aimto support all of the children and families in that area,and work closely to maintain and improve the facili-ties of the treatment centre. Their activities mayinclude: organising mutual support groups, and pro-viding hands-on support for the families, children andparents; running programmes for the children, siblingsand parents (including camps, outings, etc.); fundingmedical equipment or staff posts; improving the gen-eral facilities at the hospitals (e.g. play rooms, etc.).

Their strength comes from their close associationwith the area, and many are very successful in gettinggreat community involvement, including raising fundslocally. Typically they are very “hands-on”, and haveclose contact with individual parents and families.They are able to develop or adapt the programmesthat are most appropriate for their local situation andcommunities.

National Groups:

Many countries have national parent groups, whichhave evolved in a variety of ways. The main activitiesat a national level can include: advocacy and nationalpolicies for childhood cancer; creating relevant pro-grammes on a national scale, and if necessary assist-ing local groups to implement them; providing assis-tance and guidance to local groups to get established,and to be effective on an ongoing basis; fund-raisingfor both national and maybe local projects.

They tend not to have direct contact with the indi-vidual parents, but rather focus on the bigger issues,and in helping the local groups.

One thing that parent groups unfortunately have toaddress in some less developed countries is the fund-ing of treatment, where this is not adequately paid forwithin the public health sector. This can be at eitherlocal or national level, or both, and can end up being amajor reason for the group’s existence.

Organisation Models

If there is just one locally based group in a country,then most of the issues covered below are not rele-vant. However, where there are several local groups,they will ideally evolve a way of working together for

Legal Framework

One decision that each par-ent group must make is whetherit is going to be just an informalassociation of people, orwhether it will become a formal,legal organisation. Remainingas an informal organisation willgenerally imply that it is unableto raise funds from the public.

Most countries will have leg-islation that governs the con-duct of groups such as parent organisations. Typically,such organisations will be described as “welfareorganisations”, “charities”, “informal organisations”,“NGOs” (non-governmental organisations), or “NPOs”(non-profit organisations). For convenience, we willuse the term NPO to denote all such groups.

Because NPOs will normally collect money from thepublic to achieve their aims, most countries have someform of regulation and registration of this sector, sothat there can be the assurance that such moneys areutilised for the purposes for which they are collected.

Typically, the state will require that there is a for-mal constitution for the NPO, which defines its objec-tives, specifies how the organisation will be run, howits officers are elected, and how its finances are con-trolled. There is normally the requirement for the NPOto submit reports and audited accounts on an annualbasis to the regulating body within the government.Issues of “governance” are often emphasised, in orderto ensure that the organisation is run along properbusiness lines, and that there is no opportunity for themisuse of public funds.

In addition to whatever is required legally to operateas a NPO, there are often other aspects of legislationthat a parent organisation can conform to. Examples ofthis would be getting recognition / registration in orderfor donors to get tax benefits on their donations (e.g.the USA 501[c]3 registration), or for the organisation tobe able to claim back VAT or other taxes.

The important message is that parent groups whowant to raise funds need to be aware of the legalframework that they have to work within, and mustmake sure that they conform to it. There is often alegal person among the parents who could help withthis, or someone will know a lawyer who would beprepared to assist if asked.

Local and National organisations

– different focuses

Before we get into the potential relationshipsbetween local and national organisations, let’s look atsome of the different activities they tend to beinvolved in.

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Julian Cutland Simon Lala

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the good of all of the children and families in thecountry. This section describes the four main “models”for this relationship that we are aware of within dif-ferent countries represented in ICCCPO.

Many of the differences have come about for his-torical reasons, depending on the way in which localgroups were formed and evolved, and the inclinationsof the parents involved.

There are many possible variations within each ofthe different models, but we hope that we have cap-tured the main characteristics of each of them.

Model 1 – Completely independent

groups

In this model, there are several local groups whofunction completely independently, with little or nocontact between them.

Advantages:

Each group retains its local character, supporters,identity and funding base, and addresses the specificlocal requirements.

Disadvantages:

The groups will obtain no benefits from addressingcommon problems, and they will not be able to speakwith a common voice on matters of mutual interest.

Model 2 – Independent Groups, with a

National Umbrella Body

This model normally arises where there were pre-existing local groups who have established themselveswith significant activities, and probably a fundingbase within their communities.

They have then decided to form a national organi-sation where they can come together for mutual ben-efit, but each retains their own names and identitiesseparate from the “umbrella body”.

A typical name for such an umbrella body may be a“National Alliance” or a “Confederation” of parentorganisations. ICCCPO itself would fall into this typeof model.

Individual parents belong to the local groups; it isthe groups themselves that belong to theConfederation.

Much of the sharing of experiences and pro-grammes would be on the basis of “this works for me,see if you can adapt and use it yourself”, rather thanon consciously setting out to develop common pro-grammes for everyone.

The main power will remain firmly with the localgroups, who continue to have complete autonomy,subject possibly to some mutually agreed goals andstandards. The national body has very limited powerto enforce its views on the local groups, and it will be

successful only so long as the local groups perceivethat there is value to them from belonging to it.

There could be two variants of this model:One option would be for the umbrella body to have

a distinct legal existence, and be registered as a NPOin its own right. This would allow them to do fund-raising itself, in addition to what is done by the localgroups.

A second one is for the body to be an informalorganisation, which provides a forum for the groups tocome together for mutual interest, exchange of ideas,and to decide on coherent approaches to commonproblems. However it would be restricted in what itwould be able to do by way of fund-raising.

Advantages:

Each local group retains its local character, sup-porters, identity and funding base.

However they have a basis in the Confederationwhere they can speak with a common voice to addressmutual interests. These may include aspects of gov-ernment policies, e.g. for Health or for Social Welfare.

It also provides a forum for the exchange of infor-mation, experiences and programmes.

It provides the opportunity to do fund raising on anational scale, and tap sources of funds (e.g. of country-wide organisations) who may possibly not want tosupport purely local organisations.

Disadvantages:

This model has the potential for conflict betweenthe National Alliance and local groups in areas offund-raising. Clear agreements as to which local ornational groups will approach specific potentialdonors are desirable.

There is also the potential for conflict if the relativeroles and functions of the local and national groupsare not clearly agreed.

This model loses the possibility of creating a com-mon “brand” for Childhood Cancer in the country. Thepublic will possibly see several different organisationsand names apparently doing the same thing, andhence creating some confusion in the mind of thepublic.

Model 3 – A National organisation with

local groups - diffused control

In this model, there is a national organisation andseveral local groups, which share a common name andidentity, but where the local groups voluntarily chooseto belong to the national organisation.

The local groups generally function as in the previ-ous models, but there may be some constraints onthem resulting from their membership of the nationalorganisation. The role of the national organisation is

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to address some or all of the functions describedabove, including providing leadership and guidance tothe local groups.

Typically, each of the local groups, and the nationalorganisation, will have a separate legal identity, regis-tration as a NPO, etc. Each should be able to do itsown fund-raising.

The “balance of power” between the local andnational levels could vary. In some cases the nationalorganisation could be funded by the local groups, inothers it may raise its own funds for national purpos-es, or for distribution to member local groups. Therecould also be variations in the amount of control ofpolicies, programmes, etc. that the local groups canexercise over the national body, and vice versa.

Compared to Model 2, the national body will prob-ably play a more proactive role in identifying, develop-ing, and assisting in the implementation of commonprogrammes.

Advantages:

All of the advantages of Model 2 apply, with theaddition that there is a common identity and “brand”across the whole country.

Also, there is an even greater weight for the organ-isation when it speaks on national and advocacyissues.

There is greater potential for the development ofcommon core programmes, for the benefit of allgroups, and a reduction of the “reinvention of wheels”.

Disadvantages:

Similarly to Model 2, there is the potential for con-flict between the national and local groups in areas offund-raising, and with the relative roles and responsi-bilities at local and national levels. Clear agreementsas to the “rules of the game” for these are definitelydesirable, so that the different parts of the organisa-tion are not, and are not perceived to be, in competi-tion for the same resources.

Model 4 – A National organisation with

local groups – central control

There are considerable similarities with Model 3,but in this situation there is much tighter control overthe local groups from the national level. Generally,there will be one legal entity for the whole organisa-tion, in terms of registration as a NPO, covering boththe local and national components of the organisa-tion.

Typically, local groups are formed (and disbanded)under the control and approval of the national organi-sation, and there are common policies and standards(e.g. for financial practices, programmes, etc.) acrossall of the groups.

Some programmes and projects may be funded at anational level, from national fund raising, with otherprogrammes and fund raising done at a local level,involving the communities in each area.

Again, there can be “balance of power” issues, andthere need to be clear agreements as to what the rela-tive roles are between local and national. There needsto be an appropriate degree of autonomy for the localgroups to function effectively, while conforming to keyvalues and goals of the overall organisation.

Advantages:

All of the advantages of Model 3 apply.

Disadvantages:

Since there are probably local variations in theneeds of parents and families, there is the potentialthat local groups are too constrained by national poli-cies from meeting specific local requirements.

There is a danger that the organisation couldbecome detached from the “grass roots” parentgroups, and tend towards being a centralised, bureau-cratic organisation.

This could be a problem especially within a largecountry, with many local groups, where it may becomevery unwieldy to try to have too tight a central controlover local groups.

There is still the potential for conflict between localand national level functions.

Discussion and Conclusions

As was stated earlier, there cannot be a “one sizefits all” situation for how parent groups are organisedwithin a country. Interacting aspects of history, geog-raphy and personality will all play their parts in shap-ing the future and defining what is possible and prac-tical in a given place and time.

We do however firmly believe that there is greatmerit in having a national organisation for the child-hood cancer parent organisations within each country.

We also believe that it is absolutely essential tohave strong and active local groups, who are the peo-ple to provide hands-on support for the individualchildren and families.

The balance between these two components, andhow the relationships between them are defined, issomething that each country will have to work out foritself. It is highly desirable that this is done with goodwill on all sides, recognition of the potential benefitsand dangers of the alternatives, and with a determina-tion to see that the best is achieved for the childrenand families. There is then a far better chance ofbuilding something of value for the long term.

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It is hoped that these notes will give some assis-tance to parent groups who have to decide where theygo in the future, and how they want their organisationto evolve. They are based on a range of practical expe-riences, from people who have faced some similardecisions in the past.

However they are by no means cast in stone, andwe would welcome contributions from other parentsand groups, who feel that they can enter into the dis-cussions, and add something of value to other parentgroups from their own experiences.

Julian Cutland (South Africa) Simon Lala (New Zealand)

IGOR’S BATTLE AGAINSTTHE LUNATICS FROM L.A.

(LLA-Leukemia Lymphoblastica Akuta)

our home. The pride of place was reserved for the TVset, VCR and cartoons. We brought his bed-linen withthe clown designs as well; the only things we missedwere the piano and a fridge. All in all, everything wasfine apart from the fact that we were frequently dis-turbed by people in white overalls who kept comingand intruding into Igor’s lovely room.

However, despite the lovely room and our arma-ment, Igor was increasingly bothered by the Lunatics,experiencing great pain in his arms and legs. The doc-tor came quickly and poured into Igor’s little arm amagic potion that put a stop to all his pains. As Igordid not like “pricks“, his doctor brought a special littlecovered “screw“, fixed it to his tiny arm and pouredall the magic concoctions through it. The Lunaticswent completely crazy, running away in all directions:escaping through his mouth, nose, bottom, urine. Theywere scared to death of the color red and Igor had todrink a lot of red liquid. Sometimes the doctor tookout his Lunatics from a hole on his back and hip. Itwas painful since the Lunatics were scared of the doc-tor’s glasses and consequently started biting, scratch-ing and pinching out of fear the very moment theysaw the glasses, but it was of no use since Igor wasthe most courageous boy in the world, not frightenedby their antics. As soon as she removed them, the doc-tor quickly threw them into water and they drownedbecause they couldn’t swim. However, there weremany Lunatics hiding somewhere inside Igor’s largemuscles, wandering at random to the left and to theright, but not for a long time. Once Igor got angry, hebecame a really dangerous guy, so that even the doc-tors were scared.

In those days Igor was a very good and obedientboy and the doctor let him go home to sleep in hisbed, eat mother’s home-made lunch and granny’scakes, to play with his little brother and to go to hos-pital once the doctor had made ready various red andwhite poisons intended for the Lunatics. At home theLunatics were going to be blasted by a range of largeand small shell-pills.

2nd November, 1994.

At the beginning of this autumn, Igor, our four-yearold son, started complaining about pains in his armsand legs. Considering the fact that Igor has a brotherVladimir, younger by two years, the first thought thatoccurred to me was that probably they had had a fight- a very common thing in our home, to put it mildly.Unfortunately, this time it was not the case. Havingconducted thorough, in-depth analysis and check-ups,it was confirmed that some imprudent, restless “crea-tures“, jumping from place to place had invaded hisarms and legs, with the aim of pestering little Igor. Thesaid creatures suffer from lunacy, so consequently wecalled them “LUNATICS“. Igor politely asked them to goback, but they enjoyed his company - far be it fromthem to leave. So, he decided to expel them by forceand declared a WAR against them. My son thoughtthat those Lunatics came from the United States,more precisely, from Los Angeles. We objected to theidea, but finally we agreed. Igor had the bright ideathat the Lunatics had heard about the boy fromBelgrade, who had never ailed in his life, so theydecided to bother him. They came from the L.A. in alarge plane, having flown across the largest sea in theworld.

At the time when Igor declared war against theLunatics, he started arming himself with dangerousweapons: a sword, a rifle, a knife and a hammer. Butthat was not all. We asked our hospital for assistance;a very good female doctor worked there. After hearingIgor’s story about the Lunatics, she promised to helphim win his battle and revealed that she had verypowerful arms capable of forcing out the Lunatics;apart from that, she said, Igor was not the only war-rior. There were many other children fighting a similarbattle.

This female doctor led Igor and me to a small hos-pital room where the two of us stayed alone so thatwe had a lot of time for talking and devising a warstrategy. We furnished the room with Igor’s toys,books, pictures, even curtains, taken from his room in

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11th November, 1994.

Igor arrived home and there was a disaster. LittleVladimir was even more dangerous than the Lunaticsthemselves because he expressed the wish to be blast-ed just like Igor; he cried bitterly, begging to be takento the hospital together with his brother. In the end,Vladimir was taken to hospital as well to have his owninfusion stuck into his arm, to be examined just likeIgor and, finally, to be rewarded with sweets, just likeIgor. When Igor burst into tears, Vladimir became araging dog and beat up every single person. There wasthe rub! During his stay in hospital, Igor got used tobeing a GENERAL, therefore behaving in the same wayat home. However, he messed things up because Momand the Dad are commanders-in-chief at home. Herealized very quickly he was not the only one withLunatics, since every one of us has some Lunatics ofhis own and a secret weapon to fight against them.Igor’s fellow-friends had Lunatics inside their tonsilsso they had to undergo surgery to dispose of them;Igor was overjoyed that his Lunatics stayed in his armsand legs as he was terribly afraid of surgery.

On the second day of his stay in hospital, Igor askedme anxiously whether he was going to die. Heexplained he had heard there are some diseases onecould die of. I realized it was the topic of lengthy dis-cusions. Not knowing what to say at that moment, Ianswered I was going to slap him if he ever againasked such a foolish question. I did not want to lie tohim since lies are outlawed in our home. No-one has“a contract with God“ and nobody, including him, hasthe right to put such silly questions. He was satisfiedwith this answer, even more so when we made it quiteclear that the term “to be ill“ implies sneezing, cough-ing, fever and many other symptoms already known tohim; as he did not suffer from any of them, it meanthe was not ill. He was just at war with the Lunatics.

Igor’s Lunatics were presently a little bit drowsyafter the doctor had stunned them with differentmagic potions; it was very important not to wakethem. They could be disturbed by a blow so we madeevery effort to avoid anything of the kind; we tried toeliminate every possibility of being smacked byVladimir. It was very hard to accomplish; Igor andVladimir were simply used to a free fight. However,they quickly realized that the “PROHIBITION OF FIGHT-ING“ had positive sides. The prohibition also referredto Dad and me. Vladimir was an incredibly quick learn-er. At very dramatic points he would claim to haveLOW TROMBOCITES!!!

15th December, 1994.

Considering the fact that in any war, warriors mustundertake special precautions, we did the same tryingto fulfil and keep to all the doctor’s advice. First of all,it meant bombing the Lunatics regularly after eachmeal since they gathered around swallowed food and

as soon as they started eating, Igor launched hisbombs and killed them. It was followed by regulartooth-brushing and mouth-washing after each mealto prevent any hungry Lunatics climbing up Igor’s lit-tle teeth. Igor had the obligation to visit his hospitalat regular intervals and to report to his doctor as anyconscientious soldier does. He was always accompa-nied by Vladimir in his role of main assistant andentertainer. A woman, commonly called “sister“(nurse) waited for us in the hospital but it was beyondIgor’s grasp whose “sister“ she was! Nor could heunderstand what “a blood picture“ was but now heknew that doctors collect a couple of drops; he said “alittle bit of blood from the finger tip“. The said dropswere shot, blown up, put in fine frames and hungagainst walls so as to discern the possible hidingplaces and arms of the Lunatics. The doctor analysedIgor’s blood-picture and defined the kind of weapon tobe used in action. Once it happened that the nursetold Igor he had a low leukocyte count but the state-ment greatly confused him. I had to explain him thatthere is blood streaming along his veins (he is alreadyfamiliar with the fact). The blood contains tiny, whiteparticles-leukocytes that are in fact, his defence forceagainst the Lunatics from L.A. In the case of somefighters, you have to wait for an increased number sothat you can enforce and arm them accordingly. Thearmy sometimes gets tired and becomes sleepy.Having been injected into the spot of the greatestforce - Igor’s arm muscle - the magic potion swunginto action again. At that very moment, the army wasawake and armed, first of all, with courage. The pow-erful liquid remedy is very expensive and some otherwarriors are in lack of it, so we tried to provide it forsome other fearless kids as well.

Igor did not have any idea about haemoglobin butnow he knew that everybody’s blood contains a littleamount of iron, the stronger it is, the more powerfulthe muscles are. Igor turned into a real veteran of thewar against Lunatics from L.A.

15th January, 1995.

Christmas and New Year came and Santa Claussneaked into the kids’ room bringing presents. TheChristmas parcel included a whole host of things:books, crayons, puzzles, sweets, plane and helicoptermodels, not ordinary ones, but battery-operated, withwhirling propellers. It seemed that Santa Claus hadnot received his monthly allowance yet since he didnot include any batteries; we applied ourselves to thetask of finding all the left-over batteries in our home,checking all the clocks. As a result, all the aircraftmoved around, done to death. It was quite clear thatSanta Claus had heard about our bitter war and decid-ed to contribute the armament. The children were pre-sented with bows and arrows as it was the onlyweapon they did not possess. It took them a couple ofdays to practice arrow-shooting so Dad and I crawled

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around our home trying to avoid every possibility ofbeing hit (our foreheads made suitable targets).

At the same time we experienced a little inconven-ience because Vladimir and Dad got ill, so we sentthem to Grandma and Grandpa to be cared for.Vladimir was delighted with the situation; finally itwas his turn to complain; hence he had to be submit-ted for a medical check-up as well. However, he wasbitterly disappointed that he had been rewarded witha kind of a syrup instead of bombs. At that stage, Igorexplained to him very professionally that syrup is to beconsumed by the sick, and the bombs are given tothose that are at war with the Lunatics.

Once it happened that Igor put a question about hisattending the hospital although he was not ill! Iexplained to him that a hospital is not meant solelyfor the sick, but for the healthy as well. For instance,mothers-to-be stay at a hospital when they get ababy; they do not go to a supermarket, but to a hospi-tal and newborn healthy babies are given also a med-ical check-up. What is more, Igor and Vladimir attend-ed the same hospital when they were born, despite thefact that they were completely healthy children. Thusthe issue was settled and Igor was rarely confusednow.

He still visited his hospital at regular intervals, per-forming the task quite professionally and dutifully. Sofar he had become acquainted with many new thingsand he was fairly proficient with medical terms.Sometimes he really surprised me with his knowledgeand the way he took things. He became very choosy:he liked to select by himself the vein where a nursewas to attach “a sword“. The “sword“ had to be blackand he got rather annoyed if the action was per-formed by an aged or poorly dolled-up sister. He wasused to addressing them as “sister“ (nurse) and did notask any more whose sister she was. Admittedly it wasa very strange hospital; the physicians kept on givingthe children sweets and toys. Igor and Vladimir gotvery nice plush -made horses and simply held on tothem. They adored animals and in their games Igoralways acted the father-lion, since it is the bravestanimal, and Vladimir, being a younger brother, satis-fied himself with the role of a baby-lion. On one occa-sion Igor burst into tears in hospital and I told himlions never behave like that; hares behave like that. Hegot very offended and he has been trying eagerly notto be a hare ever since. He knew perfectly well that hisLunatics could hardly wait to see him be a coward,because then they could do anything that pleasedthem; conversely, when they felt his courage, they gotvery scared and vulnerable. During his stay in hospital,Igor made friends with many children but his favoritefellow-friend was a little boy named Fortunates whohad neither a Mom nor a Dad, not even a home sothat he had to stay in hospital. We always broughthim something nice and it was a real pleasure to

watch the two of them play. Igor was even happierbecause he managed to make Fortunates laugh. Igorunderstood vaguely that he was a very happy childsince he had all of us around him and I got theimpression that he had become even more obedientthan usual. Vladimir was still very little and he did notpay attention to all of that. He thought there were notenough of us and kept inquiring about guests.

24th February, 1995.

One morning, on arriving at the hospital, we got abig surprise. We were welcomed by an extremelybeautiful lady, so that Dad’s and Igor’s eyes nearlypopped out of their heads. The name of the beautifullady was Sister Beba and it was love at first sightbetween her and Igor. At that very point Igor’s joystarted and my and Dad’s trouble. The above namedsister fell so much in love with Igor that she kept onkissing him, consequently leaving visible traces of lip-stick all over his cheeks; it resulted in the widespreadjealousy of the whole male population within the hos-pital. There were many others who would have liked alittle bit of Beba’s lipstick on their cheeks but, ofcourse, that possibility was out of the question.Vladimir was the only one to enjoy the privilege andhe just posed so sister Beba couldn’t miss his cheeks.Our troubles started at the point when sister Bebaprohibited any kind of scolding. As a result, our ownson started reprimanding us for any trifle that there-fore resulted in a severe objection from Beba’s side.Having been of the opinion that his culinary wisheswere not being fully respected, he even started grum-bling about the cooking. Consequently our relationswere rather strained and I could smell a war. As for thebattle with the Lunatics, it was quite OK. The doctorkept strictly to her strategy. It happened on two fur-ther occasions that Igor’s army was asleep, but werepeated the procedure with a magic drink and every-thing was under control. It appeared that the Lunaticswere really a secondary problem. The real problemappeared with Igor’s belief that he could do anythingbecause he was under Beba’s protection; his doctorwas unwilling to make any objections either. He wasjust praised, cuddled and cared for and he availedhimself of the opportunity to be most important one.For days Dad and I developed a strategy on how tomake him come down to the earth; unfortunately, itseemed it was not going to be an easy task.

The good thing was that Igor was no longer afraid ofneedles, syringes and the rest of the stuff that even weelderly ones do not like. Thanks to sister Beba, Igorlearned how to prepare a shot, needle, cotton-pad andhis vein for the “sword“. Sister Beba attached the swordand he himself injected the mixture. He even managedto remove the sword from his vein with a smile; so far,unheard of. Sister Beba advised him to learn all thesethings, so that one day when he grew up, he couldcome to the hospital and help other children expel

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The children gave him a strange look and an older boyshouted mockingly:“ Hey, you bald guy!“ Igor was con-fused and neither he nor I reacted. The game contin-ued and no more attention was paid to Igor’s head.When we came back home, he complained to hisGrandpa, who himself had been hairless for a longtime, and he explained to him that the only thing thatmatters is what one has inside one’s head, not on it!At the same time, he told Igor, in case it happenedagain, to say:“ Hey beardless!“. The remark was quitean acceptable one, since neither hairlessness norbeardlessness is an oath. Igor was fairly satisfied bothwith answer and the instruction.

August, 1995.

Igor won the first and the most important victory inthis terrible war. The doctor permitted a deservedbreak and we could hardly wait to leave the city. Itwas only when we arrived in other surroundings andmet people who hadn’t a clue about the terrible battlethat was being fought in our family, that we realizedhow much effort we had engaged in the war againstthe Lunatics; we had forgotten the little, common,everyday pleasures such as sitting in a coffee-bar,window-shopping and wishing for something not nec-essarily connected with the war against the Lunatics.Despite this great victory, Igor still had to face a longroad ahead of him, leading to the final victory. Webelieved he had the power to overcome all tempta-tions awaiting for him on this long route. He enjoyedall our support and whether we liked it or not, he wasstill the GENERAL and we were his ADJUTANTS.

Irina Cepinac BanBelgrade

their Lunatics. Igor prided himself had very much,showing off constantly with the things he learned; onlya few believed him. Grandmas and Grandpas just rolledtheir eyes in astonishment and we tried to persuadethem it was not just a tale of his own.

4th April, 1995.

At the very beginning of the “our war“, Igor startedshedding his babyish hair, expecting a real manly hairto grow in a couple of months. A couple of years ago,when Dad and I had a German shepherd dog, we expe-rienced the situation of shedding of fur. We told thechildren a story about our collecting the fur for manydays, all over our home. To avoid a similar situation,we called our friend Maja to trim the children’s hair.Maja has magic scissors that do not pull out hair andchildren like them very much. Once the trimming wasfinished, we concluded that our children were muchlike escaped prisoners. A couple of days later, Igor lostall the remains of his babyish hair; he was very satis-fied that for some time he need not bother himselfwith washing and drying. By custom, Vladimir was dis-satisfied that he had more hair, and kept on askingwhy we cut Igor’s hair overnight, but not his. Hethought we had cut Igor’s hair overnight, while he wassleeping, because he noticed his hair was growing,contrary to Igor’s.

Presently, Igor was hairless and a cap was anunavoidable garment. A couple of days earlier, Igorand Vladimir had been playing with some other chil-dren in a park when suddenly his cap fell off his head.

The Chemo-Kasper booklet

is available in many

languages.

Look on our website to find

your language.

www.icccpo.org

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We place so much importance on life and deaththese days. Just look how much effort we put intomedical research and the constant quest for longerlife. Our ancestors, who lived shorter and much moreprecarious lives, would be astonished at our modernday triumphs of science. For them, death was perhapsmore of an everyday reality; awesome, but commonenough to treat it matter-of-factly.

I’m not questioning the gift of life. On the contrary,I have learnt it is precious, valuable and not a minuteof it should be wasted. It is so fragile. But death holdssuch horror nowadays that few people ever confronttheir own mortality and barely think of it. In ourenlightened society, it is a greater taboo than sex andit has become a guaranteed conversation stopper.

People are so uncomfortable with death. Look atthe euphemisms and words used to avoid it, for exam-ple. But why? It’s the one thing we all have in common– we are all born to die – oughtn’t we be able to shareour hopes and fears about it?

I think the reason may be that it is the greatestmystery of all times. Is there life after death? The fearexists because nobody has any firm answers, onlyguesses. Perhaps it should stay a mystery, to foster inus a healthy regard for life’s joys and make us use itwisely.

However it is not that simple. We have been given afew clues and perhaps there are more choices if welook for them. I sometimes despair that death is mere-ly an oblivion until I think of a beautiful sunset, an actof incredible kindness or some moving music, art orpoetry and then I can’t help feeling that there has tobe something that inspires such things. Then I begin tofeel that if these are only hints of what is to comethen the afterlife must be pretty wonderful!

So my theory is this: death itself is probably just ameans of making us value life, otherwise as Hamletsaid “we’d all top ourselves tomorrow to get to heavenmore quickly”. Life and death are therefore simply ritesof passage, like marriage or confirmation. They arepreparatory stages on a path to a fuller existence andhopefully greater happiness. I feel we should try to seethem as a means of furthering our development and asource of opportunity for achieving good.

This is how I have tried to look upon my illness anddeath, though it certainly has been harder than any-thing I imagined. Yes, I would have liked to have donea bit more in this life, but who’s to say I haven’t beensaved a few mistakes and done more good than if hadI reached the ripe old age of 123! I am thankful tohave been spared the slow decline into old age. MaybeI’ll have more fun in heaven than I would have hadhere on earth. Maybe, in that mysterious magicalplace, I will be able to read all the books written bymankind, see all the places I have never seen and bere-united with old friends and relatives whom I’vemissed. I might even find the answers to some of theworld’s puzzles, such as what Great Aunt Dorotheawas really like.

My greatest hope is that I can make amends forwrongdoings and that back here you will not grievetoo much. However, these are things that I shall haveto place in the hands of one greater than I can imag-ine; I trust He knows best. There has been so muchgood in all this that I can only begin to thank Him andyou for all you have done for me in so many ways.

Death is frightening, sad, terrifying and awful. Butit can also be exciting, fascinating, beautiful and evenfunny! If you can’t be thankful for anything else, justthink that at least I am going to get there and knowthe answer to the biggest question in humanity beforeany of you. Aren’t I lucky?

Eleanor Green(aged 17, who died of leukaemia)

Meditation on Impending Death

Now available in Indonesian lan-

guage: Radio-Robby and his fight

against the cancer cells.

Look on our website to find your

language.

www.icccpo.org

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The Fifth Anniversary of the NGO “Children and Parents Against Cancer“

On May 18th 2003 the Regional Non-GovernmentOrganization “Children and Parents Against Cancer“(St Petersburg, Russia) celebrated its fifth anniversary.

The celebration took place in the City Hall of the StPetersburg Association of Non-GovernmentOrganizations of Parents with sick children. There wereabout 50 people present.

Parents and children decorated the hall with brightballoons. Many people brought flowers. On the wallswe fixed big photos and bright hearts showing themost important events in the “history“ of our Organi-zation.

It is a good tradition to give presents on birthdays.So the Organization presented to our most activemembers photo albums with pictures of the mostinteresting events that took place during these fiveyears.

Parents made toasts to the health of all our childrenand to the future well-being and success of ourOrganization. One by one they stood up and pointedout that our Organization plays an extremely impor-tant role in their lives, that moral, psychological andmaterial support of the Organization for families withchildren with cancer are their most precious moments,helping them and their families to return to normal,ordinary life.

Many parents said words of praise for the editorialgroup of our newspaper “Zdravstvuyte(“Hello!“). Theparticipants of the celebration birthday party thankedthe editor-in chief, Elena Astashkevitch, for her excel-lent work with a big storm of applause.

All the parents and children expressed theirdeep and sincere gratitude to Katerina Kisseleva,Executive Director of the NGO “Children and Parents

Against Cancer“ and congratulated her on such a won-derful birthday. Everybody estimated extremely highher dedication to the Organization, devotion to cancerchildren’s interests, hard and excellent, highly profes-sional work and sincere attention to the really seriousproblems of cancer children’s families.

During the birthday party we had plenty of gamesand jokes; everybody laughed heartily. Elena Astash-kevitch, who led the party, invented a nice game: shethrew a balloon to the children one by one and theystood up and said tender, precious words to theirmothers. It was an extremely touching moment: girlsand boys could hardly wait for their turn, the childrenwere so eager to express their love and gratitude totheir mothers.

On that day one of the boys, Alick Ibragimov, alsocelebrated his birthday, so everybody applauded himand he received a nice present: a book about the histo-ry of Russia.

All the participants were so happy to meet eachother and they talked about their joint trips, sightsee-ing tours and performances. They spoke about theircommon friends, looked through numerous photosand enjoyed themselves immensely.

As a “dessert” there was a small concert. NikitaSemenov sang several popular songs, himself playing aguitar. All the audience sang together with him.We would like to express our deep gratitude to thecompany “Chupa-Chups“ for the packs of sweet candythey presented to children. We also want to sincerelythank the meat company “Strelets“ for that tasty foodthey shared with us on our birthday.

Katarina Kisseleva“Children and parents Against Cancer”

St. Petersburg

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Boo

ksSophia’s ChildrenSarah WongPublished by: Duo / Duo, [email protected] 90-72971-70-12003 The Netherlands

Recently in The Netherlands a most beautiful bookhas been published: Sophia’s Children, a photo bookwith text in Duch and English.

Photographer Sarah Wong walked for more thantwo years with her camera and other equipmentthrough the Sophia Childrens’Hospital in Rotterdam.Other people who see the hospital from the insidehave a function: they are doctors, nurses, psycholo-gists, play therapists. Their function opens the gate-way to intimacy. Sarah had no function, she wasmerely a photographer. She had to create her own roleand so she did by waiting patiently until the childrengave her a role.

The children took the opportunity to express them-selves in front of the camera. It gave them back thecontrol over their own world, to show their strengthand beauty, despite the circumstances.

Sarah: “The everyday reality of the Sophia Hospitalis surreal and had an enormous impact on me: thedoctor on a scooter along the corridors or childrenupside down above the bed, tied up with their dripholder, a child pinching the doctor’s nose. It was a newworld for me. And hopefully also for people looking atthis book of photographs. The children in the Sophiaare my star actors within a futurist world of pipes andracing cars. They proudly show off their plasters anddrips as if there was nothing wrong. I am very proud ofthem and the faith they put in me by posing for me.”

Marianne Naafs-Wilstra

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7th Austrian Symposiumon Pediatric Nursing

10 Years of Home Care Oncological Nursing in Vienna

Home care nursing for children and young adults with cancer

� supporting home care by giving parents respon-sibility for nursing- and treatment-related tasks(e.g. catheter care)

� overcoming the problem of large distancesbetween home and hospital; opportunities andconstraints for external care teams

� health economics. � health policy aspects; national and international

perspectives.

Abstracts should be between 1,000 and 1,500characters in length (equivalent to about 15-25lines) and the submission deadline is 15thSeptember, 2003. Where possible, please submit viaemail to [email protected] and besure to include a short bio, plus your address, tele-phone and fax number. Submissions by fax or nor-mal mail should go to “Berufsverband Kinder-krankenpflege Österreich BKKÖ”, Postfach 35, 1097Vienna, Austria, Fax +43–1-479 64 00).

We will let you know whether your paper hasbeen accepted by mid October, 2003.

With best regards,Maria Jesse, President

Berufsverband Kinderkrankenpflege ÖsterreichFritz Hausjell, Deputy Director. Kinder-Krebs-Hilfe – Elterninitiative für krebs-kranke KinderSymposium office:Berufsverband Kinderkrankenpflege ÖsterreichBKKÖPostfach 35, 1097 Vienna, AustriaTel. +43 - 1 - 470 22 33Fax +43 - 1 - 479 64 00office@kinderkrankenpflege.atwww.kinderkrankenpflege.atwww.kinderkrebshilfe.at

Call for PapersThe 7th Austrian Symposium on Pediatric Nursing

will be held in Vienna on 15/16 April, 2004. The focusis on home care nursing programs for children andyoung adults with cancer, the topic honoring thetenth anniversary of the Vienna-based home careoncological nursing service. The symposium organiz-ers are the Kinder-Krebs-Hilfe – Elterninitiative fürkrebskranke Kinder (a parent initiative supportingchildren with cancer) and the Berufsverband Kinder-krankenpflege Österreich (Austrian Association ofPediatric Nurses).

The aims of the symposium are 1. to share inter-national experiences concerning home care nursingof young patients with cancer (or any other seriousor chronic medical condition), and 2. to draw outperspectives for the future.

We’d like to invite you to submit proposals forpapers on any of the following topics, in the contextof home care nursing of children and young adultswith cancer or similarly severe medical conditions:

� the advantages and disadvantages, from theperspective of the patients, their siblings andtheir parents.

� the constraints and opportunities, from theperspective of physicians, nursing staff,psychologists and therapists.

� the constraints and opportunities for palliativecare at home of children and young adults.

� models for financing innovative approaches tohome care nursing.

� case management and coordination in pediatriconcology.

� the specific professional demands placed onphysicians, nursing staff, psychologists andtherapists.

February 26-28, 2004 3rd SIoP-Asia

Conference

in Dhaka, Bangladesh with regional ICCCPO Parent MeetingMore information can be obtained from:Salma Choudly, Chairperson [email protected]

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Thursday 2nd Oct

Afternoon Parents and survivors arrive, register, settle in18h00 – 21h00 “Meet and Greet” session

Friday 3rdOct

Session 1 09h00 – 10h30 Welcome and Opening

Convenor: Julian Cutland, Chairperson: Julian Cutland?Time Speaker Title5 m Julian Cutland Welcome from Conference Chair5 m Terry Dignan / AN.Other Welcome from Barretstown5 m Marianne Naafs-Wilstra Welcome from ICCCPO

25 m Dan Mornar & Kell May (Canada) A Patient / Parent Advocacy Program in a PaediatricOncology Centre: 4 Years Later

25m Sadie Cutland (South Africa) Organising a volunteer programme25 m Jill Gerke (Canada) Topic to be advised

10h30 – 11h00 Coffee Break

Session 2 11h00 – 12h30 Parent Groups – Development and Programmes

Convenor: Julian Cutland, Chairperson: Simon LalaTime Speaker Title15 m Ms I. Soelistyo (Indonesia) The Development of the Parents Organisation in Jakarta15 m Katerina Kisseleva (St Petersburg, Russia) Social Defence of Cancer Children in Saint-Petersburg.

The Position of The Parents Organization within the SocialStructure of the City

15 m Mi Ok Cho (Korea) One on One: Volunteer Tutor Program to Help a Child Adjust to School Life While Recovering

15 m Marina Novitskaya (Ukraine) Art and handicrafts made by hands of children with cancer: emotional therapy and real future prospect.

15 m Elfi Schattauer (Austria) E-Learning as a Motivation for Adolescents and Young Adults with Cancer - “European Computer Driving Licence – ECDL”

15 m Space for one more talk here

12h30 – 13h30 Lunch Break

Session 3 13h30 – 15h00 Group Development and Building Sustainability

Convenor: Mark Chesler, Chairperson: Mark CheslerTime Speaker Title

Mark Chesler TBAAaradhna Mittal (India) TBAWorkshops


Session 4 15h30 – 17h30 Fund-Raising, Marketing, PR

Convenor: Julian Cutland, Chairperson: Edith or IraTime Speaker Title20 m Geoff Thaxter (UK) & ANO (CR-UK) ICCD – 2003 feedback, and introduction to ICCD 200420 m Christine Wandzura Fund Raising – the gospel according to Christine5 m Charles Langhorne (UK) - maybe Cow Parades

45 m Workshops ICCD; Cow Parades?; Business Plans / PR?19h00-onwards Irish Pub Night – Barretstown Hall – Irish music, etc. (with food and good ale)

Programme for ICCCPO Meeting – Barretstown 3rd – 5th October 2003

Version 2b – 27th June 2003

19


Saturday 4th Oct

Session 5 09h00 – 10h30 Keynotes - Late Effects, Quality of Life and Bereavement

Convenor: TBA, Chairperson: Ira or EdithTime Speaker Title30 m Christine Eiser (UK) Quality of life during and after treatment for childhood

cancer – psychological aspects30 m Mike Stevens (UK) Late effects – current medical developments30 m Peter Hanlon (Ireland) - to be confirmed Aspects of bereavement –

to be confirmed


Session 6 11h00 – 12h30 Supportive and Recreational Therapy

Convenor: Christine Wandzura, Chairperson: Christine WandzuraTime Speaker Title

TBA by Chris TBA by Chris

12h30 – 13h30 Lunch Break

Session 7 13h30 – 16h15 Interactive Board Meeting and AGA

Chairperson: Marianne Naafs-WilstraTime

90 m Interactive Board Meeting – presentation & discussion of plans by ExCo15 m Short coffee & comfort Break60 m Annual General Assembly

16h30 – 18h30

New Board to meet, and also to have time with the Norwegian parents.Others to have time off to explore local surroundings or take part in the Barretstown activities.19h00 - lateICCCPO Annual Dinner and Cultural Evening at Barretstown

Sunday 5th Oct

Session 8: 09h00 – 10h30: Workshops – Childhood Cancer in Developed and Developing CountriesConvenors: as below, Chairpersons: as below

Time Organisers Title1h 30m Gerlind/Simon/Chris Childhood Cancer in Developed Countries

– problems, approaches, solutions1h 30m Sadie/Ira/Edith Childhood Cancer in Developing Countries

– problems, approaches, solutions

Session 9 10h30 – 11h00 Closing

Convenor: Board, Chairperson: Simon LalaTime Speaker Title5 m Chris or Gerlind? Feedback on Developed Countries Workshop5 m Ira or Edith? Feedback on Developing Countries Workshop

10 m Anthony Penn/Mark Chesler Feedback from Survivors Sessions10 m Simon Lala Review and Closing

11h00 Departure for the airport, etc

20


Executive CommitteeMarianne Naafs-Wilstra, ChairSchouwstede 2d3431 JB Nieuwegein, The NetherlandsTel. +31 (30)2422944 fax +31 (30)2422945e-mail: [email protected]

Simon Lala, Vice-chairman15 Jack Conway Lane (Box 76442)Manukau City, New Zealandtel. +64(9) 575-7785, fax +64 (9) 262-2132e-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]

Mark CheslerSociology Department, University of Michigan1225 South University (room 148)Ann Arbor, MI 48109-2590, U.S.A.tel. +1 (734) 647-3654, fax +1 (734) 763-6887e-mail: [email protected]

Julian Cutland50 Dawn Drive, Northcliff2195 Johannesburg, South Africatel.+ 27 (11) 678-3803, fax +27 (11) 678-4863e-mail: [email protected]

David Orren8 Hamlacha Street 47445 Ramat-Hasharon, Israeltel. +972 (3) 618870, fax +972 (3) 6138871e-mail: [email protected]

Geoff Thaxter1 Betjeman Close, CoulsdonSurrey, CR5 2LU, Englandtel: + 44 1737 555411e-mail: [email protected]

Edith GrynszpancholcMansilla 31251425 Buenos Aires, ArgentinaTel- Fax 5411 4825 5333e-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, Schowstede 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]

Looking for a book on childhood cancer in a specific language?

Simply contact the

ICCCPO International Library

hosted by:Kids Cancer Care Foundation of Alberta609 14th Street NW, Suite 205Calgary, Alberta T2N 2A1, Canada

To update the bibliography, please send yourbooks, newsletters, pamphlets, any special videos orother publications that your organization producesto Kids Cancer Care. Include (in English!) a brief out-line about the content of those materials. All mate-rials will be included in the next issue of the inter-national bibliography (which can also be found onthe website: www.icccpo.org).

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