By Chioma Obinna

While undergoing her residency at the Lagos University Teaching Hospital, LUTH, Dr. Nneka Nwobbi, Founder/President, Children Living With Cancer Foundation, CLWCF, came face to face with children with cancer whose parents were unable to offset their hospital bills. As a result, they were detained in the hospital.

The experience challenged Nwobbi to rally around a few of her friends and they pooled resources to offset the bills to enable the patients to go home. Thus the Foundation was formed.

Since then, CLWCF has facilitated care and treatment for children with cancer. In a chat with Good Health Weekly, Nwobbi spoke on the need for aggressive awareness on paediatric cancer and how society can help ameliorate the plight of affected children and their families. Excerpts:

Cancer Awareness Month

When cancer affects a child, it affects the whole family. Ordinarily, every year, September is a very, very active month for us because we go about the public trying to create awareness. But, last year because of Ebola Virus Disease, EVD, we had to shelve everything till February this year. February 4, is World Cancer Day. February 15 is our own International Childhood Cancer Day. So, we want to use the whole month of February to continue to create the awareness.

We have not even scratched the surface of childhood cancer awareness in Nigeria. Many people still don’t know that children have cancer. The theme for the February awareness programmes is “Caring for the Caregivers”. To a large extent, most of the caregivers are the parents, especially the mothers. You can imagine the psychological and emotional trauma that hits a parent when told that the child has cancer. At that moment, you’re helpless.

You’re seeing your child suffering; probably dying and there’s nothing whatsoever you can do. And most of them have burnout. They work so hard, nobody to relieve them. Nobody to exchange ideas with them. Nobody to talk to about their pains, their challenges -what they feel.

A weekend away

So, we think that this time around, we would look at the caregivers themselves and give as much as we can to them. We want to give something like a weekend away. And you have to be coming every three weeks or there about to take chemotherapy drugs. They take the child for investigations, look for blood, and chase result of the investigations and things like that.

We’re looking for people to pay for a child’s school fees – a term, two sessions.

We want to get fertility clinics like Nordica and The Bridge Clinics to give us free IVF treatment for a parent or two. Why we’re looking for IVF is that some of the parents have lost their only child to cancer. And most of them are advanced in age. We are looking for psychologists, Imams, Chaplains, priests, and pastors to give them one-on-one counseling sessions.

We’re looking for transportation, to and from the hospitals. If you cannot donate your car or driver for that day, you can donate money for taxi for the caregiver to get the child to the hospital or laboratory.

We’re looking for a home. But, in the event of not getting a home, we want to rent maybe a flat very close to LUTH, so that such parent can actually come there. So, we now have like three, four parents or families at a time, one to each room. Because most of them spend so much money coming to LUTH.

The man that comes from Badagry spends about N3,000.00 each time he comes. Some of them live at Sango. I had never been to Ikorodu until I had to visit one of our children there. I have a car; it took me practically the whole day. There was traffic. So, I asked her, how do you cope? She leaves her house around 4.30 – 5.00am to make it to LUTH for 7.30, 8.00am.

Such things are what we want to put a stop to. At least, make the parents render care with fewer rigours. You can imagine after that frustration, you’re looking at your child and you know your child has cancer; it’s not a healthy situation to live with for months, years.

We’re looking to work with as many corporate bodies as possible; as many individuals who are willing to relieve of their time, baking a cake for somebody who will know that this cake comes about as a result of the hard-work he or she has put in caring for a child that has cancer. We’re asking entertainers to have a show, just for the caregivers -knowing that somebody is thinking of their plight.

Are there challenges in this all-noble task?

Political will

There are plenty of challenges. There is very little political will to face childhood cancer. Unfortunately, Nigeria is not child friendly in this respect. I’ve talked about international cancer week. We’ve gone for a few of them. And while we were there, all that was being talked about was breast cancer, prostate cancer; colon cancer etc. nobody is talking about childhood cancer. And I’ve had cause to ask, why are we not talking about childhood cancers?

It is something that is in our face, something that is there. And perhaps, I should say self-imposed stigma because some people will not come out to say their kids have cancer. They will hide it from family members and friends, so that nobody gets to know.

Ignorance

I don’t know why there is that stigma attached to childhood cancers by affected families themselves. Another big challenge is ignorance. And I think the healthcare givers are not doing our work the way it should be done. I had a mother here last Friday whose child has cancer of the eye (Retno Blastoma).

She had the eye taken out. After the chemotherapy, they went home. No follow up, no maintenance, nothing. She’s coming back now because the other eye is affected. This child is barely three years. Then, I said to her, didn’t you know when you went home you were supposed to follow up? And she said if anybody had told her she was supposed to follow up, why wouldn’t she follow up? Although of course, the strike that took place didn’t help matters for her.

Support system

Then of course, the side effect of the drugs is not very nice. When most parents see the way their children are reacting to those drugs, when they go, they don’t come back. So, we need to educate them and tell them it is something that will stop. Even the hair falling off grows back.

So, all those things are things that need to be explained to those parents, so they know the side effects even before they start taking the chemotherapy drugs. So, that they expect it and know that it may come. And when it does come, they’re not overly frightened. And they move on with life.

Then, the support system. We don’t have enough NGOs to help out. We don’t have enough counselors. The idea of going to see a psychologist is alien in Nigeria. Its only people who are mad that will go. Meanwhile, all of us need to be counselled at one time or the other. Maybe not by a psychologist or a psychiatrist but your priest, a pastor or a mentor that will tell you its ok. Things like that are challenging to us.

Some others things like having the drugs when they are needed, having blood when it’s needed, having platelets when it’s needed. All those things are challenges. Getting the correct diagnosis. Starting treatment on time. Again, having people, your family members, your friends stay by you. But, because you don’t say these things out, nobody comes to help.

Cost of treatment

The drugs are expensive. There are some of the drugs that we get for N25,000.00 for a vial. And sometimes, a child will need four or five of that. In the last one or two months, we have had to give roughly about 16 to different children. How many parents can afford that?

We need to take a critical look at the admission fee. I believe the Federal government should make admission for cancer children free of charge because they’re there all the time. Some of them will incur debts of hundreds of thousands of naira because they’re there for a long time. Even when they do go and come back, it is still the same thing because every three weeks, they’re coming for chemotherapy.

So, every three weeks, they’re paying for admission. Admission fee for a child 12 years and below is about N13, 000.00 a week. For a child above 12 years, it’s about N25, 000.00 a week in any Federal government hospital. So, you can imagine, the admission fee is there, you then, buy your medicine, transport yourself there. I’ve had parents, after taking chemotherapy drugs, walk home with the child. This is a child that the body is depleted.

Unfortunately, we’re not getting the kind of help that will make sense. Although we have some peopled that do come to our aid.

We have GTB that every year, they do something for the kids. Linkage is another company that never fails to identify with the needs if these children. We had their wristband to show everybody the children do have cancer.

There are schools that really, really go out of their way to help. One of them is Avi-Cenna Schools where we had our Sing out Cancer in June this year. They gave us their place for use. And their students too have been quite helpful. In fact, they put oxygen point in every room in the children oncology ward in LUTH. Pinefilef is another school that is giving us quite an impact.

Most Nigerians want children to go abroad to school, but most of them don’t even understand there’s what they call community service that every child should have done before entering university abroad most times when schools who are enlightened know this, they get their students to work with us.

Cost of treatment

In all of these, the pharmaceutical companies in Nigeria are not doing all they should do. In India they manufacture the drugs right there. And because it is manufactured in India, it is much, much less expensive than drugs that are imported into India. So, for us, it’s something that pharmaceutical companies in Nigeria should look at.

We’re appealing to Pharmaceutical Society of Nigeria to try and get the license to start producing drugs in Nigeria. When India got the license to start producing drugs in India, there, it brought them much joy and reduced the cost.

I did not know there were children with cancer at the Nationa Orthopaedic Hospital, Igbobi, until one doctor there said they needed our help. I was shocked. They deal with bones and muscles, so there are children who have cancer of the bone or muscle. We work with children at LASUTH, and LUTH.