ICCCPO Newsletter       2007 - No 2

 

 

Index

From the Editors

Last Newsletter with Gerlind Bode
Happy New Year from Nepal
The Chairman’s Address

Reports from the ICCCPO Conference in Mumbai 2007: My Child Matters

IDA Foundation
Second parent group meeting in Saint Petersburg, Russia (17-19 August 2007)
Regional Meeting of cancer parent organizations of countries in former Yugoslavia (29 June 2007)
1000 Computers for 1000 children with leukemia in Turkey

International Childhood Cancer Survivor Network: Contact Report – December 2007

Miraculous Lady RITA SHAH – a true story
Age of Hope – a story
New Resources from CCLG
Books and Information
Indo-Pakistan Cancer Kids Cricket Match
For contact details of the ICCCPO Executive Committee, click here

 

 

Articles in the original newsletter that are now separate

Title

Author

Link

My Child Matters: Palliative Care for children with cancer in Bangladesh Afzal H. Choudhury Go
My Child Matters: Early Detection Campaign of Childhood Leukemia and Retinoblastoma Lastri Krisnarto (Indonesia) Go
My Child Matters: Building a Future for the Children of Romania P.A.V.E.L Go
Lobbying: Talking with Government and other agencies Jim Barclay (NZ) Go

The missing link … in Parent Support Groups in pediatric oncology in developing countries – The role of the clinical nurse coordinator (CNC) and the Jordan experience

Tha’er G. Almomani (Jordan) Go
How to establish a mentoring program in your home country Eva-Maria Casata (Austria) and Dorothee Schmid (Germany) Go

 

From the Editors

Incredible India! … was the slogan for the 2007 SIOP conference site Mumbai (India). And as the annual ICCCPO meeting was again held jointly with the SIOP-conference, the slogan was announcing the ICCCPO annual meeting as well.

In fact, it was incredible: numerous parents from all over the world, including a large delegation of Indians, came to attend a week long conference – filled with lectures, workshops, meetings and – of course - fun!

The hosts, specifically Shubha Maudgal and others from the Cancer Patients AID Association have done their outmost to have it all beautifully organized. There were many possibilities to get in contact with each other, discuss and exchange views and experiences. The annual Assembly admitted 8 new groups to the membership and thus letting ICCCPO grow to 105 members from 65 countries. The new board is presented in the following “Chairman's Address.“

This newsletter issues reflects some of the issues presented and discussed at the conference. Unfortunately, we do not get all presentations delivered for publication, but we urge everybody to send us their articles to make the newsletter a lively picture of different areas of work within the ICCCPO community.

This will also be the last issue organized and published by Gerlind Bode, as she is retiring from her position within the German Cancer Foundation. She still will be involved in the organization of the ICCCPO/SIOP-conference in Berlin together with Anders Wollmén (Sweden) and Anita Kienesberger (Austria) who are responsible for the program.

Responsible for the next newsletters will be Sarah Talbot-William from CLIC Sargent (UK) and – we hope so – many volunteers. Some have promised to donate time to the newsletter while we discussed the issue in Mumbai, such as Surabhi Kakar (India) and Nazli Müdüroglu (Turkey). And we hope that there are many organizations sending their contributions (from now on to: sarah.talbot-williams@clicsargent.org.uk).  

We wish you a prosperous and healthy year 2008!

Gerlind Bode

Marianne Naafs

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Last Newsletter with Gerlind Bode

This is the last ICCCPO Newsletter that has been compiled and edited by Gerlind Bode.

A Newsletter is the first thing a network like ICCCPO should have. It means communication with and between members, it means sharing information and experiences, and it means that all member organisations can feel that they are not alone. Gerlind knew that like no one else. Therefore she started in 1992, after the first international parent group meeting in Hanover, a newsletter that later became the ICCCPO Newsletter as you all know it today. At least 36 Newsletters came from her desk in Bonn, and (articles from) these are still available through our website www.icccpo.org.

On behalf of the editors - and I am sure I also speak for the ICCCPO board and all ICCCPO members - I want to thank Gerlind for her enormous contribution to our ICCCPO Newsletter.

Thank you, Gerlind!!!

 Marianne Naafs-Wilstra

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Happy New Year from Nepal

These wishes for the New Year were sent to us from Nepal:

HAPPY NEW YEAR 2008

I wish you Health...
So you may enjoy each day in comfort.

I wish you the Love of friends and family...
And Peace within your heart.

I wish you the Beauty of nature...
That you may enjoy the work of God.

I wish you Wisdom to choose priorities...
For those things that really matter in life.

I wish you Generosity so you may share...
All good things that come to you.

I wish you Happiness and Joy...
And Blessings for the New Year.

I wish you the best of everything...
That you, so I will deserve.

Shambu Prasad Kadariya

Cancer Society Nepal    www.cancersocietynepal.org.np

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The Chairman’s Address

We start by thanking Simon Lala for his work as Chair over the past 4 years. Simon has been instrumental in a number of developments, including WCCF. Simon continues on the Board as Treasurer.

We also say thank to Chris Wandzura, Canada, who leaves the board after 12 years service. She has made an exceptional contribution over the life of the organisation and has agreed to remain as the continental representative for North America.

We say hello to Anders Wollmén, Sweden, who joins the board, having already been actively involved in the conference planning for Mumbai.

Also, we congratulate Benson Pau, China, on becoming Vice Chair. Julian Cutland moves from Treasurer to Secretary.

SIOP Board

We say a huge thank to Professor Tim Eden who completed his term of office as President of SIOP in November. Tim has been a great advocate of ICCCPO, instrumental in setting up the World Child Cancer Foundation, and a dear friend to our board. We also welcome Professor Maarten Egeler as the new President. We share similar goals and have already agreed areas for joint working, mentioned briefly below.

Mumbai Conference

Our thanks go Chris Wandzura and Anders Wollmén, and to the local organisers Shubha Maudgal and Bharat Agarwal for an excellent conference in Mumbai.

The organisation – past, present & future

ICCCPO has come a long way since 1994 - from 12 initial members then to 108 today. It continues to be an exciting time in the development of ICCCPO.

Following a strategy review earlier this year, we have set a number of goals for the organisation. We aim to have a larger and stronger membership, which will enable more regional and continental work. And we aim to improve the way we facilitate the exchange of information and experience between members. Our work in Europe, Asia and Latin America is going well; and we continue to develop in other parts of the world. Our work in developing continental and regional structures will be a defining step for ICCCPO over the next few years.

We have the possibility through World Child Cancer Foundation over the next 2 or 3 years to provide real help in developing countries. We will work closely with SIOP, St Jude and others to ensure progress continues in improving survival rates and care standards in developed countries.

We continue to work closely with SIOP and have agreed some joint steps to support each other. These include developing membership, continental committee work, and increasing the voice of children with cancer to press for improvements in clinical trials.

Please remember this is your organisation! If you have ideas or questions, please get in touch.

With best wishes for 2008,

Geoff Thaxter
On behalf of the ICCCPO Board

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Reports from the ICCCPO Conference in Mumbai 2007: My Child Matters

UICC and Sanofi Aventis jointly took up the program My Child Matters (MCM) to advance the fight against Childhood Cancer in countries where Paediatric Oncology is still struggling to emerge.

There were reports on three of these projects, which are all available here:

Palliative Care for children with cancer in Bangladesh

Early Detection Campaign of Childhood Leukemia and Retinoblastoma (Indonesia)

Building a Future for the Children of Romania

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IDA Foundation

We would like to inform you again about the non profit drug supplier: IDA Foundation

IDA Foundation is an independent not-for-profit organization, established in 1972 in Amsterdam by a group of pharmacists committed to contribute towards greater accessibility of healthcare supplies in developing countries.

IDA’s core objective has remained to provide high quality essential drugs and medical supplies at the lowest possible price to the not-for-profit healthcare sector in developing countries, in particular:

Intergovernmental organisations

National and International NGO's and aid -organisations

National Governments

Public Healthcare institutions

IDA Foundation is the world‘s largest not-for-profit provider of pharmaceuticals and medical supplies, offering a wide range of quality assured products from stock.

More information

IDA Foundation.   P.O. Box 37098.    1030 AB Amsterdam.    The Netherlands

www.idafoundation.org

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Second parent group meeting in Saint Petersburg (17-19 August 2007)

When we started to plan the program of the meeting we proceeded from the experiences of the annual ICCCPO Conferences. The best specialists of Saint Petersburg and other regions of Russia were invited to give talks. The first part of the program was devoted to general issues and included specialists’ papers.

We had invited a member of the Finish parent association “Sylva” to talk about their work, and we learned from our European colleagues how they developed their organization in the past 25 years.

The head of the pediatric oncology in Saint-Petersburg, Dr. Margarita Belogurova, stressed the importance of cooperation of medical staff with the parents. As both are struggling for the same aim they should be a team. Dr. Belogurova presented statistics on childhood cancer in Russia and specifically in Saint-Petersburg. She demonstrated the increase of the cure rate in childhood cancer due to advanced modern medicine. She also pointed out that parents have a significant impact on these ..

Psychotherapist Igor Shats devoted his talk to the psychological facets of his work with families who have a child with children. He mentioned problems and difficulties those families encounter and showed the best ways to cope with them.

In a question-and-answer session parents could address their questions to the invited speakers and were able to discuss many of their crucial issues. Thus an interesting discussion was initiated and continued even during lunch time. Everybody was thrilled with this opportunity and wanted to listen to responses of the specialists.

After lunch the training part of the program began.

Among the participants of the conference were representatives of organizations with more than ten years of working experience, parents who had just registered their organizations as well as those who were at the beginning of their activities. And our aim was to make that part of the program interesting and useful for all categories of participants.

The first workshop dealt with the topic “How to establish/start a parent organization”.

Then we presented an issue of current importance for every member - beginners and experienced ones: ”How to find funding for the organization’s activities and how to set up a good relationship with donors“.

Svetlana Shut (fund “Viden”) shared her experience as a recipient of donations, and Utta Kirchen, member of charitable organization “Karitas”, spoke about the expectations of donors towards the applicants and their requests. The fundraising issue was of great interest to everybody as the problems of getting money for the organization’s activities and projects are equal to almost everybody.

The famous reporter Galina Artemenko covered the issue of well-organized PR-campaigns. She explained the expectations the news media apply to the ways of information content and presentation.

The third part of the conference consisted of several reports on different topics, such as innovative projects.

At the end of the conference Irina Ban and Anita Kienesberger as representatives of the International Confederation informed the audience about ICCCPO and the advantages of membership. They invited parents to involve in regional communication and network, to establish regional committees which will work closely with ICCCPO.

The participants of the meeting seemed to be very satisfied with the lectures and the information they had obtained for their everyday work and celebrated this event with a lively party in the evening. The Ukrainian delegation sang their national songs, everybody took pictures and all were eagerly happily involved in discussions and plans for future joint projects and team-work.

Katerina Kiseleva
Children and Parents Against Cancer (CAPAC)
Email: childrencancer@peterlink.ru

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Regional Meeting of cancer parent organizations of countries in former Yugoslavia

The Third Regional meeting of Childhood Cancer Parent Organizations was held in Sarajevo (Bosnia and Herzegovina) on the 29th June 2007. With the participation of 32 representatives from five countries from ex-Yugoslav grounds: Macedonia, Federation of Bosnia and Herzegovina, Serbia, Croatia and Slovenia. Parent organization from Sarajevo “A heart for children with cancer in the Federation of Bosnia and Hezegovina” organized successfully the meeting following the initiative and generous support of ICCCPO.

The meeting went on in a working atmosphere, in exceptionally good mood and the participants shared valuable experience. Everybody got the chance to represent the activities of the respective associations, to outline latest achievements in the field and present the difficulties they are faced with in their activities. Physicians held exceptional lectures, intended to the attending parents. There were many representatives of governmental institutions pointing to a notable cooperation they will manage to establish with the parents of children with cancer in Bosnia.

On behalf of ICCCPO, Anita Kienesberger welcomed all participants and expressed her deepest feelings for our joint initiative and cooperation. On behalf of ICCCPO, the document designed in Erice/Italy in October 2006 “Cure and Care After Childhood Cancer”, was presented by myself. Both parents and physicians, expressed their great interest in the above mentioned document. During the presentation, I invited people to express their opinion and it was more like interactive session than just a presentation.

The topics of this meeting were:

-  The lack of psychologists on the Hematooncology Wards - the things, already established as “a basic need”, are still considered being a luxury on our grounds. Psychologists, social workers, play-therapists, physiotherapists, defectologists and speech-therapists have no place within a medical team. Medical staff also faces great problems since they experience a “burn out” syndrome, resulting from the lack of expert psychological help and support.

-  The lack of cooperation with schools - for a child’s re-established education, there is no cooperation with a school. Children and their parents are left alone to manage and overcome hard situation; educators also face the problems since they do not know how to treat a child with cancer that attends school lectures.

-  The lack of information for parents and children - we have noticed the big progress, there is many new booklets about illness but not enough.

- Accommodation for parents „Parent house“ – only a few local parent organization provided accomodation for parents and children.

-  Cancer children in Bosnia are alone – there is no place for parents to stay with their sick children on the ward and they can stay with them only 3 hours per day!

-  Childhood cancer is a taboo – a great number of ex-patients do not know the full truth about the nature of their disease; parents lie either out of fear or lack of knowledge.

-  Survivors – only Croatia and Slovenia have established active (more-less) Survivors group.

-  Partnership with medical staffs – almost all participants expressed their difficulties in communicating with physicians but also we have realized the great progress on this topic. Bosnian doctors have written a very nice book for parents about leukemia and they are on their way to have much better communication than before. Medical staff modified their attitudes towards the patients and their families; young patients and their families are less ashamed of their disease.

-  Public awareness – thanks to the activities of the Parents’ Associations, the public awareness level has been substantially raised in the course of the previous 3-year period: frequent public appearances, marking ICCD, collection and publication of brochures within the range of ICCCPO issues, inclusion of the physicians into the promotion of the said, foundation of Regional associations etc.

-  Fundraising – is still very difficult because most of our organizations are volunteer based and we all need professional help.

-  Office – except for the organization from Sarajevo/Bosnia and “Sanus” from Split /Croatia, all other organizations are working without an office and paid staff. It means that our work is from home which is very difficult because we all know that such kind of work is a full time job.

 

This is just a part of the problems we face every day. We have realized that just a few participants understand the meaning of being ICCCPO member and this is something we have to work on in the future. Available Information on the ICCCPO website is not enough because may people do not use the internet, despite the fact that they have access. For a better mutual understanding, we are going to prepare a questionnaire “What do you know about ICCCPO” so that we might have more details about parents’ expectations and some other issues.

Regarding further regional cooperation, we have organized a Regional Committee with five parents, representatives of their organizations or countries. These parents will be responsible for further regional communication and communication with ICCCPO as well.

We have decided to organize regional meetings every second year and the parents are welcome to attend any SIOP and ICCCPO meeting but could ask for the ICCCPO scholarship only in the year when there is no regional meeting. The 4th Regional Meeting will be in Skoplje/Macedonia in June 2009.

Irina Ban
Belgrade (Serbia)

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1000 Computers for 1000 children with leukemia in Turkey

The campaign, “1000 new computers for 1000 children with leukemia” was started by numerous letters sent to LÖSEV saying, “If only I had a computer…” Till today, we gave 1000 brand new computers with the newest technology to children in hospital.

First a phone call came to the homes of our children by their brother and sisters working in LÖSEV’s Social Services Department saying, “I heard that you don’t have a computer and want one very much. Would you like to be our guest in Ankara (or Istanbul) and receive a brand new computer?” And before an answer, screams of joy are heard from the other end of the line. As a matter of fact, there can’t be a more significant answer than this. Some of them have to travel very long distances to receive the computer which they’ve being dreaming of. But they don’t feel tired at all, because in the end they are going to receive what they’ve been wanting so much. They are trained for two days by voluntary teachers. When it’s time to go back home they leave after kissing and hugging their teachers.

A nation can become an economic power with its young and dynamic population only if it transforms into an information society by educating its people. With this aim, we as LOSEV, have been implementing many projects on IT technologies for school age children who have ongoing treatment and for those who completed their treatment, in order to increase their level of overall performance and information.

As soon as our children are diagnosed, they are given an e-mail address at the hospital. Thus, while receiving treatment, they can chat with their friends, surf the web and forget their illness. When they get back home, they have the opportunity to communicate with their doctors, nurses and psychologists and receive immediate responses to their questions.

*  We socialize these children who are deprived of many opportunities of social life during their treatment and try to eliminate their feeling of isolation.

*  With special education methods, we aim to raise children who are self-confident, aware of their talent, creative, who plan to access the right information and unite their own values with global ones.

Some words from our children show their appreciation:

“I’m very happy to have a brand new computer. It’s because, my home and my hospital are far away from each other. So, now I have the chance to ask all my questions to my doctor via the Internet.”  (Emre, 13 years)

“I will be able to chat with my friends, thanks to my computer.” (Gizem, 10 years)

“My computer arrived just in time to help compensate  for my missing school terms during the treatment and also to set the basis for my future education. Thank you LÖSEV…” (Hakan, 14 years)

P.S: You may contact Turkish leukemic children and young adults via hastane@losev.org.tr

 Nazli MUDUROGLU
LÖSEV-Foundation For Children With Leukemia
Reşit Galip Cad. İlkadım Sk. No:14 GOP/Ankara TURKEY
international@losev.org.tr

www.losev.org.tr

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International Childhood Cancer Survivor Network: Contact Report – December 2007

The 2007 survivor network sessions in Mumbai, India saw 38 participants from 13 different countries (Austria, Finland, New Zealand, Serbia, Canada, Germany, The Netherlands, Indonesia, India, Hong Kong, Japan, Philippines, Pakistan) come together. The age of the childhood cancer survivors who attended ranged from 18-49 years old with approximately 2/3 of attendees being female and 1/3 male.

This year, the conference saw our very first joint session with the SIOP nurses group, sharing information of interest to both groups, such as camps, development, mentoring. This session was a great step in the information sharing between different groups who play a part in childhood cancer and its survivorship. We enjoyed many great sessions, from both the survivor programme and joint sessions with both the ICCCPO and different SIOP groups. I would like to extend my thanks to all who contributed to the survivor programme for Mumbai, 2007.

In 2008 we will again be arranging a survivor programme with the ICCCPO conference, the conference will be held in Berlin, Germany. I invite any survivor or survivor group who is interested in helping out with the arrangements for the 2008 program to contact me so we can find a suitable area for you to assist with. Just to reiterate, the survivor programme is intended for childhood cancer survivors aged 18 years or over who currently play a roll in survivorship activities in their own country, or who would like to establish such activities.

If we don’t have contact with a survivor group in your country, or you would like to start a survivor group, please contact me and we can share some information.

I look forward to seeing many survivors at the 2008 conference in Berlin, Germany!

Prudence Walker-Cuttance, Chairperson
International Childhood Cancer Survivor Network  
iccsnetwork@gmail.com
 

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Miraculous Lady RITA SHAH – a true story

Astonishing but still the true - people in today’s world are so busy with their day-to-day activities that they have forgotten to concentrate on the minute things and importance of their lives. We hardly believe in miracles and ignore them but still there are some unsolved facts, still there are some people who have defeated death and Rita is one of them.

The Woman who has not only defeated death, but also is leading a healthy and comfortable life has set an example for all of us, despite the fact that her twin sibling died in infancy, her sister was suffering from depression, her father got her a step mom who left the house in unusual circumstances so you can understand that there was no love and affection for our dear Rita. As you know that it is difficult to sail a ship in the desert, she managed to sail the ship in the “desert of CANCER.”

Rita, who lost her mother at the age of thirteen, where kids are busy with the new things to come up in the life, got trapped with the diagnosis of cancer. Her late mother did not accept the diagnosis as she wanted her daughter to get married in the well settled family like other girls were getting married after a certain age. But unfortunately, God’s will was different. Rita was a brilliant student and hoped to become a doctor. She was still a student when her cancer -started.

Fathers love to take their kids to roam around in a zoo, a park, or go to the movies. But Rita’s father took her to Tata Memorial Hospital for checkups. She once asked her father why she had to go to the Tata Memorial Hospital when she was not suffering from any diseases. Her father had no answer for his innocent daughter, he couldn’t even lie. She felt that her life was ruthless and she was a total trash for her father, knowing that she won’t bloom like other flowers. But soon she diverted her mind, her thought to religious & spiritual things. Such belief forced her to lead a new life, or you can say: Rita got a reincarnation.

Beyond spiritual and religious support, medical science has also played a vital role in her treatment. A large team of doctors participated in her treatment. According to Rita, these doctors are Gods for her. Rita was once asked whether the battle which she won against cancer was a miracle, self determination or a scientific victory.

In 1972, a tumor in the throat was observed by her family-GP, who gave treatment to cure the tumor. But when the tumor was not cured, the doctor performed an operation and sent tumor tissue to the J.J. Hospital for further diagnosis. At the hospital, the doctors suspected that the tumor was not benigne and they sent a sample to the Tata Memorial Hospital, where it was confirmed that the tumor was cancerous.

Rita suffererd from blood cancer. Her father was shocked to hear that. She got radiation therapy for one month in Tata Memorial Hospital and after two years (that was in 1974) she had to undergo a chemotherapy for Hodgkin’s Disease.

In the year 2002 it was detected that she was suffering from pericardia effusion and she got a heart surgery in Lilavati Hospital.

On 14th February 2003 her uterus had to be removed as it was found cancerous and she was treated with radio therapy, which cured her from the uterus cancer.

Rita and cancer were like companions staying together for 35 years fighting against it confidently and fearlessly. It was quite an impossible task to treat this disease and for Rita it was the dangerous one as it was difficult for her and her family to afford such high expenditure. Many hardships connected with the disease and the treatment did not discourage her to try to lead a life as normal as possible, even though her family suffered from a financial crisis.

She also had to look after her father and mentally ill sister. In order handle the family situation, she started a job hunt and got help by an Estate and Finance Agency to set up a beauty parlour in Mumbai.

She can be proud about her achievements:

-  Maharashtra Governor Award Winner on 19th March 1990.

-  Indian Cancer Society honored Rita by interviewing her for the Video namely “You are the Cure" in which Bollywood superstar Mr. Amitabh Bachan had also given his views and which was displayed world wide.

-  The beauty show which was organized by ZALWADI MITRA MANDAL handled queries regarding Skin, Beauty and Hair Problems.

-  “V Care” has also honored Rita by presenting her the award of the first cancer survivor. It was handed to her by Mr. and Mrs. Gandhi.

She still has many queries not answered:

-  Who is responsible for her total expenditure and precious time which she lost during the most dangerous cancerous diseases?

-  Who will come forward and raise their hand to help Rita?

-  What will Rita do if society, relatives, organizations, institutions wont step ahead to rescue her from the devastating situations?

-  How will a cancer survivor lead his/her life after defeating the ferocious disease?

-  Why does nobody help such people who want to lead a normal life?

Her Views:

-  She does not want others having to experience the same conditions she suffered from.

-  She feels that life has a lot of pros & cons and many different and unusual situations can be handled. But being a cancer patient she got strong will power, self confidence and mental strength.

Her Wishes:

-  She desires to travel across the globe and also urges to visit holy Jain temples.

-  She hopes that the family stays together.

Her Message:

“LEAD A FEARLESS LIFE AND WITH STAND AGAINST ANY DISASTOUROUS SITUATION WHICH DESTINY PLACES AGAINST YOU”

Rita Sha, Mumbai
ritaloveparas3@rediffmail.com

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Age of Hope – a story

Before my time, no one lived past 25 years of age. The radioactive cloud that surrounded the planet like the atmosphere, caused cancer from the moment a baby emerged from its mother’s womb and breathed air for the first time.

This atmosphere of death, they said, was caused by the last world war.

Some called it the last of humanity’s foolishness and ignorance. Others called it God’s punishment -- or doomsday at a slow pace.

People married at the age of 14 or 15, or as soon as girls got their first period. Love was the very least reason for marriage, as survival of humanity took first priority.

They also didn’t waste their lives thinking about the future, or ambitions, religion, pride, ego or dreams. So there was no more war, hunger or injustice anywhere in the world.

Every single day that blessed these people was the one thing they treasured.

And this had been going on for 300 years. Until Terry was born.

Many said he was a miracle. He was the second coming, a messiah that would lead humans to salvation. Others said he was just another step in human evolution.

Terry was born without cancer.

All the scientists in the world could not understand this extremely rare phenomenon. Even after many extensive tests, they could not find anything that made Terry immune to the cancer. He was healthy, bright and sensitive.

Terry’s parents died when he was eight years old, which was very common. Being told that he was going to live longer than anyone else in the world did not make it easier for the poor, grieving child.

“Until when?” Asked Terry.

“A hundred years, maybe,” answered his 17-year-old uncle. “If you live a healthy life.”

“But then what do I do?”

“Do what you do. Live. For the rest of us,” was his reply.

An innocent child, Terry did not really grasp the meaning of his uncle’s words. He was just happy that his uncle, his most favorite person in the world now that his papa and mama had passed, was still alive.

They were never apart. Wherever and whenever the uncle went, Terry tagged along. Terry never wanted another companion or friend. His uncle was his only friend and that was that.

Ultimately, this really concerned the uncle. His time was almost up. His condition was getting worse every week.

When he was gone, who would take care of Terry? Who would be the best single companion Terry would have?

But one day, Terry came to him: “Uncle, I think I’m in love.”

“Oh yeah? Are you sure?”

“Yeah, she is great. Funny, smart...” 

Best wishes for you, kid. Keep on living no matter what. You have the greatest gift in the world. Don’t waste it. Live it. If not for yourself, then for somebody else. So long. Your uncle.

When Terry read the note Uncle had left for him to read after his death, he finally realized something, something that terrified him for the rest of his life: He would always be alone, no matter what.

And his fear proved to be true.

His wife died after giving birth to their first son. Terry was 25 years old when this happened.

At the same time, he became the oldest person in the world. Everybody in the world celebrated his birthday. This should have been the happiest time for Terry.

But Terry was far from happy.

He had lost his parents, his uncle and his loving wife. And since the son did not share his dad’s gift, Terry would soon lose his only son too.

He started to hate his gift. He wanted to be normal.

“But you are normal...,” said one of his friends.

“No! I mean normal like everybody else in the world!”

“We are not normal, we are dying of cancer.”

“Dying of cancer is normal in this world. You all live and die happily. But for me, I just live and live and I’m sick of it already!” said Terry.

But he lived on, no matter that he liked it or not.

Soon, Terry was not only the oldest person, but he was also the angriest and bitterest person in the world. He was angry and bitter to every single person he knew, including his son, who gradually began to hate Terry.

When the son turned 15, he decided to live far away from his father.

Terry did not care. It was not that he did not love his son. He just thought it would be too painful to bury his only flesh and blood.

His friends were also starting to pull away from him. Terry did not mind either.

He was a freak now. Who wanted to be friends with a freak?

Soon after, he became the loneliest person in the world, living all by himself in a secluded house. He never came out and nobody ever visited his house.

Only some delivery men occasionally dropped by with Terry’s daily needs.

And as the years went by, his existence became legend, a myth about the oldest person in the world. They said he was a white-haired, wrinkled man who ate children if they were naughty or misbehaved.

No one really knew anything about the real Terry since everyone who had known him little or well had died. 

Until one day, a teenage girl holding a baby came to his door.

The girl did not have any hair left and looked very pale.

“Who are you?” asked Terry, who was then 50 years old.

“I’m your granddaughter,” answered the girl. Then she showed him the baby. “And this is your great-grandson.”

The girl had one of the worst types of cancer. Her hair was just the beginning. The cancer cells would attack all her internal organs one by one. Soon, she would not be able to see or eat or breathe. And since she had only a few weeks left of life, she wanted Terry to take care of her only child.

“Out of the question!” roared Terry in horror.

The girl looked at her grandpa with great sadness -- but she did not look surprised.

“You are afraid, aren’t you? Of losing your loved ones. That’s why you’re keeping yourself away from all of us. So you won’t get hurt when we die. It’s all about you, isn’t it? You and your gift,” she said.

“It’s not a gift. It’s a damn curse!” said Terry bitterly.

“Is it a curse to have no horrible disease raging through your body? To live much longer than everybody else in the world? To be free of pills or capsules at every single meal? To be able to see your children grow up and marry somebody? To have grandchildren and great-grandchildren?”

“What’s it for, if I also have to watch them die?” he said, softly.

“Have you ever considered that maybe it’s not for you? That it’s for them? So that you can tell them about life before their time? So that you can take care of their children when they’re dying. So that they will always have you around, no matter what,” his granddaughter said.

If not for yourself, then for somebody else... Do what you do. Live. For the rest of us...

His granddaughter’s words hit Terry like a huge hammer on the head. He suddenly fell and cried on his granddaughter’s knees and begged for forgiveness.

He realized how foolish and selfish he had been all this time. His uncle had tried to tell him so long ago, but he could not hear it. Or at least, he could not understand it.

And the one who finally made him understand was his grandchild, one he had only just met – and would lose all too soon.

Terry took care of his great-grandson with great love and passion after his granddaughter died. He decided to open himself to everybody again and do exactly what he was meant to do in this world.

No one could forget the first time they saw a white-haired and wrinkled man finally come out of hiding and walk around in public. No one had ever seen a 50-year-old man before.

Just the sight of him made everyone’s heart glow with hopes, dreams and a realization that Terry would always be around for all their lives.

When I was born, Terry was 102 years old.

He was happy and glad, knowing there was someone else to take his place.

Jakarta, Aug. 22, 2006
Priesnanda Dwisatria

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New Resources from CCLG

2007 has been a very busy year for the CCLG Publications Committee. At the time of writing, in early November, the Committee has produced 7 new leaflets and booklets with a further 4 due in print before the end of the year – see the list below.  Those of you who attended the ICCCPO/SIOP conference in Mumbai this year are likely to have picked up copies already but if you require further copies do contact CCLG.  Resources are free but you may need to pay for postage costs if ordering several copies.

New in 2007:

Bereavement: where to go for help

An 8 page guide for families and professionals when a child or young person has died from cancer.

Childhood Cancer – A fact sheet for GPs

This fact sheet is aimed at UK General Practitioners providing an overview of childhood cancer including background, problems during treatment, late effects and palliative care.

Children with cancer and pets

An 8 page leaflet for parents and carers of children with cancer who own pets.  Provides simple guidelines on reducing the risk of catching an infection from a pet.

End of Treatment, what happens next?

A 32 page booklet for parents and carers of children with cancer.  Aims to help answer some of the many questions and concerns that arise when the child finishes treatment for cancer.

End of Treatment…what happens next?

A 28 page booklet aimed at 10-16 year olds.  Aims to help answer the many questions and concerns that arise when young people finish their treatment for cancer.

Resources for school staff  when children return after cancer treatment

A 4 page leaflet to inform all school staff of potential sources of support when a pupil is returning to their school after treatment for cancer, or while still on treatment.

Due in print by end 2007:
Ben’s Bone Marrow Transplant

A guide for young people undergoing bone marrow transplantation.

Choices

A booklet with suggestions for parents and carers when curative treatment for their child is no longer an option.

Facing the Death of your child

A guide for families covering all aspects of bereavement.

Parents Guide to Brain and Spinal Tumours

A guide for parents covering all aspects of care following diagnosis of a brain or spinal tumour.

The following leaflets and booklets are also available from CCLG and most are downloadable from www.childcancer.org.uk:

-  Ben’s Bone Marrow Transplant (for young children)