For most people, it is not only strange to hear, but pathetic to know that children, even as young as a month-old, could be afflicted with cancer – the world’s most dreaded disease. Unfortunately, this is a sad reality of what some children have to contend with at a very young age. Children Living with Cancer Foundation (CLWCF), is one of the few non-governmental organisations in Nigeria pioneering the fight against childhood cancer. Dr. Nneka Nwobi , the President of the Foundation talks about her long walk with children living with cancer, her experience in the battle against cancer, her frustrations and pains when a child dies of cancer,  the future plans of the Foundation and other sundry issues with Esther Onyegbula.

What actually led to the establishment of this Foundation?

One of the people that actually got me interested in children living with cancer; was a patient’s father. We had a clash simply because I dared to suggest to him that his child should be investigated for cancer. The man had no idea that children could suffer from cancer and to him, I must be out of my mind to suggest that his child had cancer. But before then as a medical student here in LUTH, I had met several children with cancer, so I was like how can this man not know that this child has childhood cancer?

So at the end of the day, the child was discharged and the parents didn’t bring him back because of N25,000 for the chemotherapy. Instead, they took him to church. And because the treatment of cancer is not a one -off thing, you have to keep coming  until the child goes into remission and all that, coming for check ups and all that. So it was at that point that I realized that most of these parents had no idea of childhood cancer. That was what gave birth to the Foundation; to create awareness on childhood cancers and assist children living with cancer medically. To make people realize that children do have cancers.

Is it just about creating more awareness, can’t NGOs go beyond just creating awareness?

We do things that are tangible to assist children living with cancer. But the truth remains that knowledge is power, the awareness is to help Nigerians become aware of childhood cancer as they are about breast and cervical cancer. When you talk about cancer, even the layman on the street thinks about breast cancer. We want people to become child -cancer aware. So by the time they see signs and symptoms, they should investigate that child. Let mothers  touch their children and know who their children are, get the child to the hospital on time. What we are doing is giving information. And knowledge is power.

*Dr. Nneka Nwobi
*Dr. Nneka Nwobi

What  are the likely symptoms  of childhood cancer?

Some of them are as common as fever, bone pain; it is just like what we have in leukemia. It is important that we  alert everyone on childhood cancer. It is a house -hold thing so most people need to be aware that childhood cancer is close, and that we can’t find a solution by wishing it away or rejecting it. It doesn’t end that way.

The religious issue is really a problem for medical practitioners. For instance when you give them a leaflet containing childhood cancer, most parents throw it away

Why  does the Foundation focus most of its activities in LUTH?

I studied here as a medical student and did some residency here and then decided to float the Foundation. Afterwards, I resigned to enable me face the Foundation properly. Although, I am no longer with LUTH, as they say charity begins at home, there is no other place that I know than LUTH. This was where I was nurtured; this was where I had my mummies and daddies in the profession. This was where I met the people who made me look into child health are. So this is where I belong. It is not as if we don’t work with other organisations like National Orthopaedic Hospital or LASUTH but mainly our activities centers around here.

When they gave us the oncology ward and we refurbished it, it gave me that joy knowing that I am able to come back to where I studied and make a difference, it was like coming back to my roots.

How  affordable is the treatment for childhood cancer?

Childhood cancer treatment is very expensive. For example, a complete treatment for kidney cancer (nephroblastoma), which lasts for less than six months and is not as costly as cancer of the blood, will cost parents of an affected child nothing less than N1 million. And we will have to monitor the child up to five years before we can say he is okay.

It takes between N7 million and N10 million to cure blood cancer, which lasts  two to three years. So, it’s not feasible for an average Nigerian family to afford the cure for cancer. That is one of the reasons why our cure rate is very low because there’s a lot of treatment abandonment. The parents come and when they see the enormous cost, they just go away. And the next time you see them, they tell you the child died at home.

What has  been the limitation to the battle against childhood cancer?

One of the limitations  we realize over time  is that people are not keen to know about childhood cancer because it is not as glamourous as women who will organize parties, shows and all that. And for many people, once you start talking about childhood cancer, they say it is not my portion in Jesus name, they simply don’t want to know. And even in the health sector, childhood cancer is not given the attention that it requires. Now that most people are coming on board, maybe the perception will change

What  do you think can be done to make people more aware?

Let the government get involved, if the government becomes  more involved, definitely things will change, because at the moment ,this is more  like personal effort.

What has been  your experience  with children living  with cancer?

My experience in collaborating with individuals, organizations and institutions on cancer disease has revealed that most cancer cases that eventually lead to death are those detected at late stages. This is why all should support groups and individuals involved in the fight against cancer in order to successfully tackle the challenges of cancer disease, which threatens the entire human race.

Cancer has become a societal problem and it can only be addressed  by our collective efforts, commitment and strong determination to save  ourselves ; our mothers, our sisters and now, our children from avoidable pains, agonies and loss of useful and vibrant lives. Childhood cancers certainly are not known to very many of us. As most cancer cases that we are aware of are all associated with adults, the sad truth as we now  know is that even children are not spared and are indeed dying of the cancer disease.

What is your advice to Nigerians  on childhood cancer?

Checking the scourge of childhood cancer required collective effort because of the huge amount of money involved in treating each case. Childhood cancer is not a death sentence, it is curable though expensive to manage; but there should be enough  money to make the treatment free for children in this country. If about 10,000 people contribute N1, 000 monthly and with N10 million, it would go a long way to bringing relief  to parents because access to drugs is not the problem, but affordability.

What  is the future of this Foundation?

We are collaborating not just with cancer organisations, and non communicable diseases,  we are also part of an international organisation. We are trying to see how we can get 25% cure rate by the year 2025. We are starting gradually and we are  hoping that as time goes on, we would get  more children cured.

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