Truth be told, until last week, I never knew that young kids have cancer, until I met 2 of those suffering from it, an 8 year old very beautiful girl who has (LEUKEMIA) blood cancer and a 5 year old, I was very moved to tears and I thought it would be terrible of me, not to let the whole world know what's going on, so that collectively, we can help to save many and wipe away many tears, the write up below is from the foundation and you can contact them directly yourself, if you would love to contribute to the well-being of the kids.
Cancer is the second leading cause of death in children less than fifteen years of age. One in every 300 children will likely get cancer before the age of sixteen. Each year about 200 admissions is made for different types of cancer in most teaching hospitals in Nigeria, very sad and harrowing but luckily, cancer in children is much more curable than in adults. Cure rate of around 85% can be achieved with modern treatment strategies when diagnosis is established early in the course of the disease and the appropriate treatment given. Late diagnosis, unavailability of medications and difficult access to adequate medical care will all compromise children’s chance to be cured. This is so common in Nigeria that it is almost the norm.
Because No child should be denied the right to be cured for lack of financial means CLWCF (Children Living With Cancer Foundation) was founded in 2004 by a group of friends. It is the first and only such charity in Nigeria.
CLWCF's work is based entirely on volunteer work and donations.
Our Mission and Goals
Our main areas of focus and primary effort are:
1. To create awareness that children also have cancer, but children cancers are curable.
2. To save as many lives as possible through early detection and prompt medical attention.
3. Cancer is an expensive ailment even for the rich. However, cancer medication is a lot less expensive when diagnosed early and treatment started on time.
4. Educate the masses about childhood cancers
OUR MAIN OBJECTIVES
A) To care for children living with cancer and generally create and stimulate maximun awareness of the public in this direction.
B) To involve the Federal, State and Local Government, Ministries, Health and other relevant bodies in the careful management of these children where necessary and ensuring that these children are happy and look forward to the future with hope and confidence.
C) To involve Religious Bodies, Traditional Rulers, Community Leaders and men and women of distinction in the society and all other relevant organizations in the treatment and welfare of the children and by doing so giving them a chance in life.
D) To undertake and develop relevant training program, researches and medical studies into the disease of cancer generally in children and all it’s ramifications, with a view to alleviate the suffering of victims.
E) To liaise with, amalgamate and join other Organizations with similar aims and objectives with a view to enhance the aims and objectives of the foundation.
F) To establish the ‘Children living with cancer fund’ both here in Nigeria and overseas with a view of getting national and international support in whatever form.
G) To establish and run with qualified medical personnel a children’s cancer centre cater to for children living with cancer.
CLWCF is made up of three trustees-
Dr (Mrs) Nneka Nwobbi
Miss Chinwe Keazor now Mrs Jamie McGuire
Mrs Nkechi Iwuchuckwu.
Legal Adviser-
Barrister Reginald Nwobbi.
Patrons – Mr Mallinson Ukatu,
Prince Yemisi Shyllon
Pharm John Paul Nzewi,
Mrs Olga Cavier.
Programs Coordinator-
Pat Okoro
Lots of members, most of who either worked with children with cancer, know a child with cancer, lost a child to cancer, or just do not want more children lost to childhood cancer.
Volunteers from all works of life including students of various schools who feel a need to give back to the society and their peers. The ages of our volunteers range from 6 years to 72 years.
Our Accomplishments
Since it was established, CLWCF has provided to several children without any cost to their families
-Total or partial coverage of expenses related to chemotherapy
-Support with medications
-Counselling for the children and their families
-Support for families
-International consult and collaboration
-Increasing awareness of childhood cancers
Activities
Activities are carried out by CLWCF for the children mainly to give them another side of life apart from the hospitalization, Chemotherapies, hair falling out, hospital food etc.
The activities include
-Having birthday parties for the children especially those on admission on their birthdays.
-Children’s day activities which is held yearly around the 27th of may
-Walkathon during the cancer awareness month yearly
-Art exhibition organised by the artist community of Nigeria, where works are totally or partially donated to CLWCF are sold and the proceeds goes to CLWCF.
-Christmas party and visit by Santa Claus every year. This year, CLWCF will be visiting two Teaching Hospitals-Lagos University Teaching Hospital, and Lagos State University Teaching Hospital.
-Hospital visit by CLWCF volunteers.
Public Education And Cancer Awareness Campaigns
Ask most Nigerians what cancer they know about, the first on the list will be breast cancer. Few know that children can and do have cancer. Less than few know the types of cancer any child may have. Because of the attitude, knowledge and practice of Nigerians getting to give them fliers about childhood cancer proved difficult with most rejecting the fliers saying it was not their portion and others covering themselves with the blood of Jesus
We have gone past this stage, there is still fear of the unknown but most are willing to be educated about childhood cancer now.
Our Program of awareness include;
-Workshops at the palm shopping malls.
-Seminars at school.
-walkathon
-Television and Newspaper interviews on childhood cancer.
-Articles in various Newspapers and magazines.
-Lectures and Presentations in different areas in Lagos.
-Lectures at hospitals for health care givers.
CLWCF awareness campaign has another dimension to it now. SIOP (International Organization of Paediatric Oncologists) came up with the early warning signs for the developing countries. These signs are referred to as the SAINT SILUAN’s SIGNS. CLWCF has seized the opportunity to increase awareness of childhood cancers by circulating these warning signs.
As part of our awareness program, CLWCF is set to start from the grassroots. We are going to the entire 130 primary health care centre to teach the health care givers, and the mothers that are met on immunization days the saint siluan’s sign. These are signs and symptoms that are common to childhood cancers.
CLWCF became an associate member of the International confederation of childhood cancer parent organisation (ICCCPO) in 2007. ICCCPO was founded in 1994 in Spain by representatives of parent organisation from just a few countries. Now ICCCPO has grown to a strong Organisation with presently more than 118 members Organisation. Nigeria is one of the few member country of ICCCPO from the West Africa region Ghana is another West Africa country in ICCCPO but is currently an associate member. ICCCPO celebrated its 15yrs of existence with 15 stories of childhood cancer survivors from fifteen countries. Members Organisations were asked for these stories. Latin America, Asia and Africa showed that fifteen years ago survival rate were much lower and thus much less success stories seem to be available. CLWCF intends to change this. We intend to have more success stories to tell. This can be achieved by creating awareness, having facilities where appropriate treatment can be given,
-Early and accurate diagnosis
-Dedicated health professional
-well equipped lab
Prompt and appropriate treatment
-Appropriate medications, surgery’s for the particular cancer
-Bone marrow bank
-Bone marrow donors
Psychological support for the children and their families
-Family members
-Friends
-Religious group
-Counselling, etc
Appropriate facility for treatment
-Typing of the type of cancer
-HLA compatibility
-Transplants
CLWCF is also a member of ICISG, a cancer information service organisation. CLWCF gives information over the phone, person to person talk to anyone selling information about childhood cancer Other not for profit organisations in Nigeria who are members of ICISG are
The BLOOM cancer care group and COPE
CHILDHOOD CANCER STATISTICS (LUTH)
Some of the most common children cancers seen and treated at LUTH Hematology/ Oncology unit of the pediatric department and the statistics over a period of 18 months (July 2005 to January 2007) are as follows.
CANCER TYPE NUMBER OF CASE
1) Lymphoma 27
2) leukemia 35
3) Nephroblastoma 62
4) Neuroblastoma 23
5) Rhabdomyosacoma 4
6) Retinoblastoma 6
7) Nasopharyngial cancer 2
8) Sacrococcygial teratoma 1
9) Hepatoblastoma 1
Total 163
Male - 108 = 66.3%
Female - 55 = 33.7%
This is as against 540 admission made by the same unit which also caters for children living with HIV and sickle cell anemia among other illness, in the same 18 months period, i.e. 163 as against 540 (about 30% of the admissions)
Realities of childhood cancer in Low Income Countries (eg Nigeria)
There are several myths which one finds related to childhood cancer. These include:
1. Children do not have cancer/ cannot get cancer.
2. Even if they did, it is a death sentence anyway and can’t be treated.
3. It is a “white man’s illness”, and indigenous populations don’t get it.
All of these are obviously false, but we have found that these beliefs can occur widely, sometimes even in the medical professions. It can be one of the major tasks of a CCF to address and correct these beliefs, with the public, government and health professions.
It is very probable that the burden of childhood cancer is not recognised in many countries. It is believed that in South Africa (which is one of the more developed countries on the continent and which has good childhood cancer treatment centres) less than half of the children with cancer are actually diagnosed. And of those that are, many are already in an advanced stage of the illness, with obvious implications for a poor prognosis. The situation is probably far worse in other countries in Africa and other LICs.
There are doubtless many reasons which contribute to such situations. One of them is probably a lack of knowledge on the part of medical and nursing staff. It just may not be “on the radar screen” for many of them, especially in rural areas. The symptoms may be interpreted as being caused by many other diseases, often until the condition is very far advanced.
It has to be recognised that the treatment of cancer is generally expensive, and requires significant medical resources. Where a country is faced with limited budgets for their health systems, it is understandable that childhood cancer is fairly low down on the priority list. This is exacerbated where the country is faced by the burdens of infectious diseases, such as malaria, TB, cholera, and HIV/AIDS ( As in Nigeria). In these situations, it may be a rational and cost effective decision to allocate medical resources to those areas and illnesses which have a higher payback in terms of the number of children’s lives saved per dollar spent.
So in LICs, childhood cancer has to compete for scarce medical resources with many other demands, which may be considered to have a higher priority. However this should not be a reason for inaction; there is much that can be done to improve the situation of children and their families, even in such constrained circumstances. It is possible to make a real difference.
This difference can be made if we are willing. Are you?
Thank you.
Cancer is the second leading cause of death in children less than fifteen years of age. One in every 300 children will likely get cancer before the age of sixteen. Each year about 200 admissions is made for different types of cancer in most teaching hospitals in Nigeria, very sad and harrowing but luckily, cancer in children is much more curable than in adults. Cure rate of around 85% can be achieved with modern treatment strategies when diagnosis is established early in the course of the disease and the appropriate treatment given. Late diagnosis, unavailability of medications and difficult access to adequate medical care will all compromise children’s chance to be cured. This is so common in Nigeria that it is almost the norm.
Because No child should be denied the right to be cured for lack of financial means CLWCF (Children Living With Cancer Foundation) was founded in 2004 by a group of friends. It is the first and only such charity in Nigeria.
CLWCF's work is based entirely on volunteer work and donations.
Our Mission and Goals
Our main areas of focus and primary effort are:
1. To create awareness that children also have cancer, but children cancers are curable.
2. To save as many lives as possible through early detection and prompt medical attention.
3. Cancer is an expensive ailment even for the rich. However, cancer medication is a lot less expensive when diagnosed early and treatment started on time.
4. Educate the masses about childhood cancers
OUR MAIN OBJECTIVES
A) To care for children living with cancer and generally create and stimulate maximun awareness of the public in this direction.
B) To involve the Federal, State and Local Government, Ministries, Health and other relevant bodies in the careful management of these children where necessary and ensuring that these children are happy and look forward to the future with hope and confidence.
C) To involve Religious Bodies, Traditional Rulers, Community Leaders and men and women of distinction in the society and all other relevant organizations in the treatment and welfare of the children and by doing so giving them a chance in life.
D) To undertake and develop relevant training program, researches and medical studies into the disease of cancer generally in children and all it’s ramifications, with a view to alleviate the suffering of victims.
E) To liaise with, amalgamate and join other Organizations with similar aims and objectives with a view to enhance the aims and objectives of the foundation.
F) To establish the ‘Children living with cancer fund’ both here in Nigeria and overseas with a view of getting national and international support in whatever form.
G) To establish and run with qualified medical personnel a children’s cancer centre cater to for children living with cancer.
CLWCF is made up of three trustees-
Dr (Mrs) Nneka Nwobbi
Miss Chinwe Keazor now Mrs Jamie McGuire
Mrs Nkechi Iwuchuckwu.
Legal Adviser-
Barrister Reginald Nwobbi.
Patrons – Mr Mallinson Ukatu,
Prince Yemisi Shyllon
Pharm John Paul Nzewi,
Mrs Olga Cavier.
Programs Coordinator-
Pat Okoro
Lots of members, most of who either worked with children with cancer, know a child with cancer, lost a child to cancer, or just do not want more children lost to childhood cancer.
Volunteers from all works of life including students of various schools who feel a need to give back to the society and their peers. The ages of our volunteers range from 6 years to 72 years.
Our Accomplishments
Since it was established, CLWCF has provided to several children without any cost to their families
-Total or partial coverage of expenses related to chemotherapy
-Support with medications
-Counselling for the children and their families
-Support for families
-International consult and collaboration
-Increasing awareness of childhood cancers
Activities
Activities are carried out by CLWCF for the children mainly to give them another side of life apart from the hospitalization, Chemotherapies, hair falling out, hospital food etc.
The activities include
-Having birthday parties for the children especially those on admission on their birthdays.
-Children’s day activities which is held yearly around the 27th of may
-Walkathon during the cancer awareness month yearly
-Art exhibition organised by the artist community of Nigeria, where works are totally or partially donated to CLWCF are sold and the proceeds goes to CLWCF.
-Christmas party and visit by Santa Claus every year. This year, CLWCF will be visiting two Teaching Hospitals-Lagos University Teaching Hospital, and Lagos State University Teaching Hospital.
-Hospital visit by CLWCF volunteers.
Public Education And Cancer Awareness Campaigns
Ask most Nigerians what cancer they know about, the first on the list will be breast cancer. Few know that children can and do have cancer. Less than few know the types of cancer any child may have. Because of the attitude, knowledge and practice of Nigerians getting to give them fliers about childhood cancer proved difficult with most rejecting the fliers saying it was not their portion and others covering themselves with the blood of Jesus
We have gone past this stage, there is still fear of the unknown but most are willing to be educated about childhood cancer now.
Our Program of awareness include;
-Workshops at the palm shopping malls.
-Seminars at school.
-walkathon
-Television and Newspaper interviews on childhood cancer.
-Articles in various Newspapers and magazines.
-Lectures and Presentations in different areas in Lagos.
-Lectures at hospitals for health care givers.
CLWCF awareness campaign has another dimension to it now. SIOP (International Organization of Paediatric Oncologists) came up with the early warning signs for the developing countries. These signs are referred to as the SAINT SILUAN’s SIGNS. CLWCF has seized the opportunity to increase awareness of childhood cancers by circulating these warning signs.
As part of our awareness program, CLWCF is set to start from the grassroots. We are going to the entire 130 primary health care centre to teach the health care givers, and the mothers that are met on immunization days the saint siluan’s sign. These are signs and symptoms that are common to childhood cancers.
CLWCF became an associate member of the International confederation of childhood cancer parent organisation (ICCCPO) in 2007. ICCCPO was founded in 1994 in Spain by representatives of parent organisation from just a few countries. Now ICCCPO has grown to a strong Organisation with presently more than 118 members Organisation. Nigeria is one of the few member country of ICCCPO from the West Africa region Ghana is another West Africa country in ICCCPO but is currently an associate member. ICCCPO celebrated its 15yrs of existence with 15 stories of childhood cancer survivors from fifteen countries. Members Organisations were asked for these stories. Latin America, Asia and Africa showed that fifteen years ago survival rate were much lower and thus much less success stories seem to be available. CLWCF intends to change this. We intend to have more success stories to tell. This can be achieved by creating awareness, having facilities where appropriate treatment can be given,
-Early and accurate diagnosis
-Dedicated health professional
-well equipped lab
Prompt and appropriate treatment
-Appropriate medications, surgery’s for the particular cancer
-Bone marrow bank
-Bone marrow donors
Psychological support for the children and their families
-Family members
-Friends
-Religious group
-Counselling, etc
Appropriate facility for treatment
-Typing of the type of cancer
-HLA compatibility
-Transplants
CLWCF is also a member of ICISG, a cancer information service organisation. CLWCF gives information over the phone, person to person talk to anyone selling information about childhood cancer Other not for profit organisations in Nigeria who are members of ICISG are
The BLOOM cancer care group and COPE
CHILDHOOD CANCER STATISTICS (LUTH)
Some of the most common children cancers seen and treated at LUTH Hematology/ Oncology unit of the pediatric department and the statistics over a period of 18 months (July 2005 to January 2007) are as follows.
CANCER TYPE NUMBER OF CASE
1) Lymphoma 27
2) leukemia 35
3) Nephroblastoma 62
4) Neuroblastoma 23
5) Rhabdomyosacoma 4
6) Retinoblastoma 6
7) Nasopharyngial cancer 2
8) Sacrococcygial teratoma 1
9) Hepatoblastoma 1
Total 163
Male - 108 = 66.3%
Female - 55 = 33.7%
This is as against 540 admission made by the same unit which also caters for children living with HIV and sickle cell anemia among other illness, in the same 18 months period, i.e. 163 as against 540 (about 30% of the admissions)
There are several myths which one finds related to childhood cancer. These include:
1. Children do not have cancer/ cannot get cancer.
2. Even if they did, it is a death sentence anyway and can’t be treated.
3. It is a “white man’s illness”, and indigenous populations don’t get it.
All of these are obviously false, but we have found that these beliefs can occur widely, sometimes even in the medical professions. It can be one of the major tasks of a CCF to address and correct these beliefs, with the public, government and health professions.
It is very probable that the burden of childhood cancer is not recognised in many countries. It is believed that in South Africa (which is one of the more developed countries on the continent and which has good childhood cancer treatment centres) less than half of the children with cancer are actually diagnosed. And of those that are, many are already in an advanced stage of the illness, with obvious implications for a poor prognosis. The situation is probably far worse in other countries in Africa and other LICs.
There are doubtless many reasons which contribute to such situations. One of them is probably a lack of knowledge on the part of medical and nursing staff. It just may not be “on the radar screen” for many of them, especially in rural areas. The symptoms may be interpreted as being caused by many other diseases, often until the condition is very far advanced.
It has to be recognised that the treatment of cancer is generally expensive, and requires significant medical resources. Where a country is faced with limited budgets for their health systems, it is understandable that childhood cancer is fairly low down on the priority list. This is exacerbated where the country is faced by the burdens of infectious diseases, such as malaria, TB, cholera, and HIV/AIDS ( As in Nigeria). In these situations, it may be a rational and cost effective decision to allocate medical resources to those areas and illnesses which have a higher payback in terms of the number of children’s lives saved per dollar spent.
So in LICs, childhood cancer has to compete for scarce medical resources with many other demands, which may be considered to have a higher priority. However this should not be a reason for inaction; there is much that can be done to improve the situation of children and their families, even in such constrained circumstances. It is possible to make a real difference.
This difference can be made if we are willing. Are you?
Thank you.
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