Recently, some Children Living with Cancer had their birthday celebrated at Lagos University Teaching Hospital, (LUTH) by the Children Living with Cancer Foundation, (CLWCF). In this interview with Dr. Nneka Nwobi, founder of Childhood Cancer Foundation, she said childhood cancer is a battle that still needs a lot of effort to combat. According to her, it is a traumatic experience that does not spare both parents and the child. OLUWATOSIN OMONIYI writes
Will you say we’ve won the fight against childhood cancer so far?
I don’t think so. We’re currently talking around a 20 to 25 per cent cure rate, but by 2030, we will be talking about 60 per cent in developing countries versus 80-90 per cent in developed countries.
With COVID-19, I lost a lot of cancer children, not only because of the cancer but because of the complications from the COVID-19 as well, in the sense that a lot of children with cancer live outside Lagos, and getting into Lagos was difficult. I have a lot of children living in Ikorodu, Otta in Ogun, Ibadan, and other places, and getting into Lagos was difficult.
There have been no movement in Lagos, even last year in September and October, parents joined a Zoom meeting to learn how to care for their children with cancer. But as you know, not all parents can afford to buy data and smartphone.
So, not all parents were able to attend the zoom meeting and we haven’t started the party yet but we expect to start it this month, and we’re hoping to exchange data with those parents who can’t participate physically, so that they can join through Zoom. I’m not sure why the emergency starts at night for children with cancer.
During the lockdown, curfew, security officers prevented parents from taking their children to the hospital, and even doctors were barred from coming out at night.
What percentage are we (Nigeria) as of 2021?
We’re anywhere between 18 and 25 per cent.
What are the parents’ responses to their children who have cancer?
We have so many broken homes and only a few parents comply. One man came to me and asked for a DNA test on his child to determine whether he is the true owner of the child.
Do you believe that the parents’ refusal to comply is a factor to the child’s death?
Yes, indeed. They don’t say anything in front of the kids but they do come out and say a lot of things to the kids, who are listening. As a result, the child will feel guilty, believing that he or she is the one who is causing the fight between them. Some of their siblings feel bad, believing that they are to blame for their sick sibling’s illness. One came to see me and said that he wonders if the curse he put on his brother caused him to become ill. He explained that he had argued and fought with his brother few months back and he has cursed him in his mind that he would be very sick. Please accept my humble request. I have one point to make, and it applies to both private and public companies: Parents, who are caring for children with cancer should never be fired from their employment. Some parents will lose their jobs, compounding their problems; others will lose both their children and their jobs. What we do most times for women who lost their job in the process, we try to set up small scale businesses for them. The money they gain from the business is not enough for them to manage because that was not what they were into before.
Have you been able to catch these children’s and their parents’ final moments?
I believe the parents will be the best people to tell you what they were thinking and feeling at that moment. When a child is older, they will tell you how they feel. But, some children choose to hide their pain because they know what their parents will go through when they die.
Sometimes, it’s only the child’s father that will ask that child what he or she want him to do for them and one child told his parents that he needed them to throw him a party. They asked the ward if they could throw him a party because that was his last dying wish, and the ward agreed.
They threw him a big party and few weeks after the party, the child died. Abroad, they have this make-a-wish foundation over there, and whatever you wish for on your deathbed, the foundation will do all it can to make your wish come true. So, if parents in Nigeria will agree or admit that their children will die, they can try to make that child happy before he or she dies.
What categories of children are mostly affected by cancer?
Every child; from birth to the age of 18. What is the average age of the children you’ve been treating? The youngest I’ve seen in Nigeria was nine weeks old, and some of them grow up with us, to the point that our bed can no longer hold them because they are more like young adults.
Will you say that treating a child with cancer is easier or less costly than treating an adult with cancer?
No! treating a cancer-stricken child is prohibitively costly. How long would it take to treat a cancer-stricken child? It’s dependent on the child’s age, stage, and presentation time. Some are nine months, others are two years, and even others are three years.
What are the things we need to do to keep the children safe and alive before we reach the 60per cent mark?
We need to keep things in place to make recovery go quickly, starting with raising awareness. As we always suggest, when there is political will, it is not difficult to do any of those things and now, almost everyone is suffering from COVID-19, which, like any other disease, should be handled.
Allowing everything to calm down with COVID-19, is very painful and there are times that someone goes to the emergency ward and no bed space because everything has been constricted, so that there will be enough room for COVID-19 patients.
What are the difficulties you’re dealing with specifically?
Medication, lack of knowledge, and diagnosis are all factors to consider. Making a diagnosis, unlike malaria or typhoid, is a huge task. Before you can diagnose cancer, you have to go through a slew of tests, and convincing the child’s parents that the child has cancer is much more challenging.
Some Nigerian parents are adamant about it. Instead of seeking care from the hospital, they take the child outside and get another diagnosis, going to church, herbalists, and other places to get alternative treatments, but they eventually return to the hospital for assistance because the other choices they thought were better, did not work out for them.
One of the challenges for some parents who live in places like Ikorodu, Ota, Ibadan and others, is the gap.
They get up as early as 4 a.m. to get to LUTH on time, and by the time they are finished in the hospital, it will be about 4 or 5 p.m., and they can begin driving back to their different homes. One of our greatest challenges is that some parents do not believe in children’s cancer.
What are signs and symptoms that a child is likely to be diagnosed with cancer?
To begin, what is cancer? It has to do with cells. Our whole body is made up of cells, and when you think of cells, you can think of cancer. Brain cancer manifests itself in a variety of ways, including headaches, vomiting, slurred speech, and eye e.t.c. There are several signs but let’s start with censorial cells. If a child is constantly ill, he or she may have cancer; also, check the eyes for dark circles or dark spots around the eyes; if so, take the child to the hospital to be checked; and check for lumps around the ear regions. Secondly, lumps (the letter L stands for lump) should be checked to see if there are any lumps anywhere on the child’s body (the letter U stands for unexplained fever). When a child’s gums aren’t as healthy as they used to be and blood is gushing out of his or her mouth while brushing, you should get the child tested. When an infant is born, he or she begins to achieve milestones such as leg control, vision, and standing. Crawling, beginning to feed himself, a child who was doing all of this suddenly stops or you find that the child’s head is getting larger, something is wrong with that child’s head, and you should get the child tested. Kidney cancer can cause lumps in the abdomen in some children. Kidney cancer is most prevalent in children aged 2 to 5.
How will an uneducated parent be made aware of these symptoms in their children?
What we are also hoping to accomplish, every Nigerian child goes for immunization from birth to the age of five years for vaccines. So, we are seeking funding to go to the grassroots, to primary health centres, and educate healthcare givers.
The signs and symptoms have been boldly written out in various Nigerian languages, so that parents who come there, even from pregnancy when they go for antenatal, they sing songs even before seeing the health caregiver. They teach them this thing at the grassroots level.
So, we are working on educating the health caregiver so that they can educate the pregnant women.
Is there government support for childhood cancer?
There aren’t certainly.
What steps are you taking in this regard?
They have the interior for well-being in the Nigeria Cancer Society; however, being a member of the Nigeria Cancer Society is one thing, and being able to fight is another.
We need to persuade the government to acknowledge that there is a crisis by the size. With any policy you have to make your case felt, not only in health but in other fields as well, but keep in mind that many people forget about children when they talk.
They focus more about adult cancer rather than childhood cancer. I know a few people who would dismiss you if you approach them to discuss childhood cancer. When I tried to speak to a doctor about childhood cancer in Lagos, he said,
“Do you know how much it costs to treat a child with cancer?” He mentioned that the funds would be used to help 5,000 children who are suffering from diarrhea. Since children are unable to speak up for themselves, they are relegated to the background, with adults being the ones that are often discussed.
What are the chances of survival for those children who have cancer and are undergoing treatment?
It depends on the type of cancer and the point at which it was discovered. If it is stage one, the child’s chances of survival are good but if it is stage four or five, there isn’t anything anyone can do. When it comes to palliative care in Nigeria, I believe it is nil.
While parents abroad will agree that their children will die and begin to make the end of life period more enjoyable for them, Nigerian parents will never accept that their child will die. It is a death sentence in Nigeria if you tell anyone that they have cancer.
So, as much as we don’t want someone to die, if anyone comes in late and there’s nothing we can do, I’ll do whatever I can to make that person’s life as comfortable as possible. It’s very important to me because we have so many children whose primary concern is their parents.
One child told me that he knew he was going to die but his only worry was his mother, whom he couldn’t tell because she would weep. Previously, two children in his ward had died, and he was waiting for his turn to die. We want to start telling a child’s story every year because most children know when they are going to die.
The media isn’t really supporting us; we want to start telling a child’s story every year. There was one child who knew she was going to die, but she wanted her mother to be away when she died.
So, she kept sending her mother out on errands to buy her various items, and she died before her mother returned.