ICCCPO Newsletter 2007 - No 2
|Last Newsletter with Gerlind Bode|
|Happy New Year from Nepal|
|The Chairman’s Address|
parent group meeting in Saint Petersburg, Russia (17-19
|Regional Meeting of cancer parent organizations of countries in former Yugoslavia (29 June 2007)|
|1000 Computers for 1000 children with leukemia in Turkey|
|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
|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|
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
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.
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!
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.“
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
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.
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: firstname.lastname@example.org).
wish you a prosperous and healthy year 2008!
Back to index
Newsletter with Gerlind Bode
This is the
last ICCCPO Newsletter that has been compiled and edited by Gerlind Bode.
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.
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
Back to index
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
That you may enjoy the work of God.
I wish you Wisdom to
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 Blessings for the New Year.
I wish you the best of
That you, so I will deserve.
Shambu Prasad Kadariya
Back to index
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.
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
hello to Anders Wollmén, Sweden, who joins the board, having already been
actively involved in the conference planning for Mumbai.
congratulate Benson Pau, China, on becoming Vice Chair. Julian Cutland moves
from Treasurer to Secretary.
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
thanks go Chris Wandzura and Anders Wollmén, and to the local organisers Shubha
Maudgal and Bharat Agarwal for an excellent conference in Mumbai.
organisation – past, present & future
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.
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.
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.
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
remember this is your organisation! If you have ideas or questions, please get
best wishes for 2008,
On behalf of the ICCCPO Board
Back to index
Reports from the ICCCPO Conference in Mumbai 2007: My Child Matters
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)
a Future for the Children of Romania
Back to index
We would like to inform you again about the non profit drug supplier: IDA
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:
National and International NGO's and aid -organisations
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.
IDA Foundation. P.O. Box 37098. 1030 AB
Amsterdam. The Netherlands
Back to index
parent group meeting in Saint Petersburg (17-19
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
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.
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 ..
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.
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.
lunch the training part of the program began.
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.
first workshop dealt with the topic “How to establish/start a parent
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“.
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
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.
third part of the conference consisted of several reports on different topics,
such as innovative projects.
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.
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.
Children and Parents Against Cancer (CAPAC)
Back to index
Meeting of cancer parent organizations of countries in former Yugoslavia
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.
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.
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.
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
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
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.
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.
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
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.
Back to index
1000 Computers for 1000 children with leukemia in Turkey
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.
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.
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
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
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.
words from our children show
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)
will be able to chat with my friends, thanks to my computer.”
(Gizem, 10 years)
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)
You may contact Turkish leukemic children and young adults via email@example.com
LÖSEV-Foundation For Children With Leukemia
Reşit Galip Cad. İlkadım Sk. No:14 GOP/Ankara TURKEY
Back to index
International Childhood Cancer Survivor Network: Contact Report – December 2007
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.
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,
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.
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.
forward to seeing many survivors at the 2008 conference in Berlin, Germany!
International Childhood Cancer Survivor Network
Back to index
Lady RITA SHAH –
a true story
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.
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.”
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
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.
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
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
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.
year 2002 it was detected that she was suffering from pericardia effusion and
she got a heart surgery in Lilavati Hospital.
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.
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.
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.
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.
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
Why does nobody help such people who want to lead a normal life?
She does not want others having to experience the same conditions she
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.
She desires to travel across the globe and also urges to visit holy Jain
She hopes that the family stays together.
A FEARLESS LIFE AND WITH STAND AGAINST ANY DISASTOUROUS SITUATION WHICH DESTINY
PLACES AGAINST YOU”
Back to index
of Hope –
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.
atmosphere of death, they said, was caused by the last world war.
called it the last of humanity’s foolishness and ignorance. Others called it
God’s punishment -- or doomsday at a slow pace.
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
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.
single day that blessed these people was the one thing they treasured.
had been going on for 300 years. Until Terry was born.
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
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.
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.
when?” Asked Terry.
hundred years, maybe,” answered his 17-year-old uncle. “If you live a
then what do I do?”
what you do. Live. For the rest of us,” was his reply.
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.
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.
this really concerned the uncle. His time was almost up. His condition was
getting worse every week.
was gone, who would take care of Terry? Who would be the best single companion
Terry would have?
day, Terry came to him: “Uncle, I think I’m in love.”
yeah? Are you sure?”
she is great. Funny, smart...”
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.
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.
fear proved to be true.
died after giving birth to their first son. Terry was 25 years old when this
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.
Terry was far from happy.
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.
started to hate his gift. He wanted to be normal.
you are normal...,” said one of his friends.
mean normal like everybody else in the world!”
are not normal, we are dying of cancer.”
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.
lived on, no matter that he liked it or not.
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.
son turned 15, he decided to live far away from his father.
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.
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?
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.
some delivery men occasionally dropped by with Terry’s daily needs.
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.
really knew anything about the real Terry since everyone who had known him
little or well had died.
one day, a teenage girl holding a baby came to his door.
did not have any hair left and looked very pale.
are you?” asked Terry, who was then 50 years old.
your granddaughter,” answered the girl. Then she showed him the baby. “And
this is your great-grandson.”
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.
of the question!” roared Terry in horror.
looked at her grandpa with great sadness -- but she did not look surprised.
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.
not a gift. It’s a damn curse!” said Terry bitterly.
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?”
it for, if I also have to watch them die?” he said, softly.
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.
for yourself, then for somebody else... Do what you do. Live. For the rest of
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.
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
one who finally made him understand was his grandchild, one he had only just met
– and would lose all too soon.
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.
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
sight of him made everyone’s heart glow with hopes, dreams and a realization
that Terry would always be around for all their lives.
was born, Terry was 102 years old.
happy and glad, knowing there was someone else to take his place.
Aug. 22, 2006
Back to index
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
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
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.
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
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.
in print by end 2007:
Ben’s Bone Marrow Transplant
A guide for young people undergoing bone marrow transplantation.
A booklet with suggestions for parents and carers when curative treatment
for their child is no longer an option.
Facing the Death of
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.
following leaflets and booklets are also available from CCLG and most are
Ben’s Bone Marrow Transplant (for young children)