 Good afternoon, everyone, and welcome to another edition of Cancer with Dr. Denise Adyoseo of Cormood Cancer Foundation in partnership with Floss TV Africa. I want to thank you all for joining us again today. I hope you have been enjoying yourself, and as we look forward or we are in our electoral season, we look forward to God's grace upon each and every one of us. So let's talk about it. What is our title today? It's childhood cancers, the journey and support of a lived experience. This month is International Childhood Cancer. International Cancer, Childhood Cancer Day was celebrated on the 15th of February 2023. It is a global collaborative campaign to raise awareness about childhood cancers and to express support for children and adolescents with cancer, the survivors and their families. Also, the Day raises awareness for and honors all children and families experiencing the effects of the disease. It acknowledges their pain, their difficulties, giving them space to process and grieve. In the house today, I've got a I've got actually two people. Let's see if our second guest can join us. But as we start, we've got our special guest, Dr, Dr. Nek Kanwubishi is an advocate for childhood cancers and has continually worked with them. Well, we have to remember that let's close the gap in cancer care to cure all children with cancer. I said it again, to cure all children with cancers. That's what we're going to be talking about. So let's look at what we've got. Dr. Nkwubishi is a seasoned and committed healthcare professional with extensive experience leading public sector on childhood cancer awareness, treatment and care of children cancer warriors. Oh, Dr. Thank you. Thank you. Thank you for this afternoon. Thank you for your time. Dr. Nkwubishi believes that every child should have the benefit of the best possible treatment at as little to no cost as possible. And she's passionately engaged in promotion of healthy lifestyle notification. Doc, I want to say thank you for joining us this afternoon. Thank you for your time. Today, we're going to have a nice chat. I know how much work you've been doing with children. And unfortunately, our survivor may not be able to connect with us. But then I know you can always talk us through the process because you've worked and lived with them and understand the challenges that they face. So let's look at it. And I'm going to ask you some questions. Are you ready for me now? Definitely. Okay. So let's look at it. First and foremost, from your experience of working and supporting children with cancers, can you talk us through your work, your work that you have been doing and what impact you would share with us would say has made a difference? Okay. Actually, working with kids who have cancer since 20, 20,000 to 2003. And that's almost like 20 years this year. But even before then, having the person to work with children and then seeing that most of these children, their parents had no idea that children can have cancer. Even now, we still have an open task, trying to convince parents that children too can have cancer. So that's actually how we started, trying to create awareness and then raise funds for children who, whose parents are not afford the treatments. That's basically how we started. That's a good one. Okay. So bearing in mind that you see one of things we have to be very factual is that one of things I always try to do is let us try and be honest with each other and be honest with the populace about this. Can you briefly tell us what you would say would be an average lived experience from your support work of a cancer patient? So how do they, you see, I live with the disease. So I know what it is like from an adult perspective. I don't really have an idea and I'm very, I always say to people, don't ever say you understand something if you have not sat in that chair, but you can at least give an idea of what you, from your work experience with them, what you would say is their lived experience. The fear of every parent is, you know, not being able to do anything for your child and of course the word cancer and something that frightens everybody. Cancer and adult frightens everybody. Now talking about cancer in one's charge is something that is unfortunately, you can't even begin to think about having a child that have cancer. And then when you don't have the means to actually care for the child, the way the child should be cared for, that's, you know, also brings up another part of trauma or problem or challenge for the parents. Now for the children, because most of them are too young to understand what is going on, and some of them are old enough. I mean, a child of, let's say, 7, 8, 9, 10 and above would know that there is something amiss. There is something wrong, you know, because of course we've seen, or usually the parents, the mothers are always crying, you know, and the child would perceive that it is because of me that mommy is always sad and always crying. As a matter of fact, I had a child, he was 7 and the child was so, you know, he was analyzing things, wasn't able to speak, to talk about what he was going through. Basically, because he feels that if he talks about how he's feeling or what he was going through, the mother will become more upset, you know, so trying to get them out of that mood, to be able to speak out, because really I believe that being able to talk about what one is going through would actually help give that person, you know, some help, you know, and we don't have that amount of psychological treatments for our children and their families, because when cancer affects a child, it actually affects every member of that family, you know, so I was talking with this boy and it was like that he's waiting for his own turn for him to pass on. I was quite shocked and I was like why would he say such a thing? He said, I adopt a seed. This person on this bed has passed. The other person on the other bed has passed. I'm wondering when it will go to my turn and I can't talk to mommy about it because it would upset her even more, you know, and then you talk about the financial burden that, you know, this brings on families. It's not, it's a huge challenge because it is not a one-off treatment. It's something that, that, you know, won't go for treatment. The minimum period of time that one takes the treatment is slightly less than a year and the maximum is almost like a, but even when one achieves cure, one thing needs to come up to follow up. So it's almost like a lifetime thing. You can't just achieve cure and then touch your boots and say okay that's it. I'm going, I'm not going to come back for check-up and things like that. So that trauma is always like that. The psychological trauma, the financial trauma and then one of the things that we see is that some of these parents after treatment lose their jobs because, you know, one person has to stay in the hospital with the child. Most of the caregivers at the end of treatment or within the treatment are asked to stop work because they're spending more time out of work than at work, you know. So these are some of the challenges that we face and of course sometimes even getting the medications is not as easy as one would expect. Oncology drugs are all open drugs because they're not as common as other drugs like leciparastamol or anti-malaria treatment drugs. So that's just some of the things that some of the challenges that we face. Thank you doc. Wow, you know, because I live with the disease, I can identify with everything you've just said and it's very heartbreaking because, yeah, where do the parents come from? What are the children thinking, you know, maybe because I'm a teacher, I've already got, I'm quite sad because children are the heritage of the Lord. That's my own view and Boycal to already accept such in the very early stage of their life is very heartbreaking for me. So, okay, so based on what you've just said, now you've just identified some challenges that cancer patients or their families go through with this. Okay, now you own a cancer foundation for children and why did you, what was your particular interest, why was it important to you, you know, when you listen to what the children have to say, I'm sure you will have sleepless nights sometimes. But why did you decide to go down this road? Well, actually, while doing residency, I met a couple of children but the one that actually decided this for me was a boy who was two years, nine months, and I was just entering into the pregnancy room and the father had gotten, you know, because I told him to the father he had malaria, he had malaria, you know, and after taking a歷史 I was about to find, yes, who investigated for malaria but would also like to investigate for leukemia. And the man was too very upset, he was really angry. I was like, how can you say leukemia? Is leukemia not the type of cancer? And I'm like, yes, it is, but that actually a child is not enough to three years, I am saying leukemia. And well, long story short, the child was investigated and I really had leukemia, you know, and I had this boy between very good friends and after the first treatments, after the first admission he went home and came back home the day before the first. Because I had gotten close to the family, I actually went to their house and the father told me, look, we have sold everything we have for that first admission. We don't have money for this and he's not our only child. We have other children, we have rent to pay, food, transportation, clothing and other things, all the money we have spent on this one child. I'm taking him to church and so he took him to church and was given him a particular steroid and the boy was getting beat and as far as they were concerned, the child was okay and I didn't see them again until the day before he passed. You know, so it was very heartbreaking for me because I knew that, you know, given a chance, he came in early, given a chance, he could have survived, you know. So we, I went around, spoke to some friends of mine and we actually went to pay for the admission, subsequent admission, but the parents were like, you know, they weren't having any of that. So that was actually how the foundation was started. And of course, the warden told me, one of them came from Sierra Leone and because they couldn't pay the fees, they were, in the ward each time, you know, the new treatment starts, after the treatment, they can't go home because they're not, they're owing the hospital, you know, and that was very, very saddening for the mother. The mother will sit down and beat, you know, going on the internet to find out if there were any charities that could help with their matter, they didn't see any. And so that was how it started. Wow, okay. Let me just say this because, you know, me, I like to tell people the truth. This is what, this is my lived experience. I really want to appreciate you for doing this. More because I know what, what you're talking about, and I know the pain that we all go through. Wow, wow, wow. Okay. Let's take a break now, everyone, and then we'll be back. You know, one of the things I've always found is that when you listen to the experience, the experiences of a, of a cancer patient, it gives us all an understanding of what is going on in the minds and hearts of people that go through this disease. Dr. Neka, thank you. Thank you. Just hold on a minute. Let's take a quick break, and then we'll be back, everyone, to continue this conversation on the childhood cancers and their lived experiences. Thank you very much. Thank you, everyone, for coming back on. We are discussing the lived experiences of childhood, of childhood cancer. This month is World Cancer Childhood Cancer, International Childhood Cancer Month. So, I will continue our conversation with Dr. Neka Mwobi, who is an advocate and runs her own child cancer charity. So, before I even go very far, Doc, please, can you tell us the name of your NGO? Children Living with Faster Foundation. Thank you, please. I hope you heard what she said. She said, Children Living with Cancer Foundation. People like me will tell you what it means. Living with cancer is not an easy experience. I am deemed as an adult living with cancer. Thank you very much, Doc, for actually your work. Let's continue this conversation. So, what are your views on the support process and guidance required to help families? What would be your support? What would be your views, because you can't love everybody's problem? Basically, you know, Nigeria is a very funny place. Some parents don't even want family members to know that their children or their child have cancer. So, they are missing out on the family supports that they could have, you know, and then on Children Living, we'll have some adults that don't want to hear anything about childhood cancers. It's not my question. I read it in Jesus' name and all that. So, such adults who've been to schools, you know, because we feel that the adults were hearing us, so we took them to schools to try to teach them. They will not take it home. Some schools were very receptive, especially schools grown by foreigners, unfortunately. Some schools were like, you know, we don't want our children to be burdened by the fact that these children have cancer and that they will die, you know, that their children may be affected psychologically, and they won't have us come to the school to tell the science and symptoms of childhood cancers. Now, we need family support. There is not plenty palliative care for children who have cancer in Nigeria, because I don't think there's much palliative care centers in Nigeria. We are just passing in that direction, you know, to build up palliative care systems and all that, you know, putting it into the system that is already existing in Nigeria. So, we need all that, because definitely some of these children come in very late and really, actually, there's nothing that one can do. When I say palliative care, I mean from the beginning, it doesn't mean that the child will die, no, but to help, you know, form the world goal, helping the parents to understand what it is all about. We also need to even teach the healthcare givers how to break this news, the reference, because it's not in you that can just break like that, and you have to be certain of what you're talking about before you label the child, you know, as having cancer. The support that we need is not a bit too thin. It's something that is quite large. We need the support of the healthcare system, we need the support of the educational system, the financial institution, the government. You know, the government have to have the political will to recognize that children can have cancer and start putting in place these steps that would help not just the children, but also their families, because like I said before, the families are quite affected. The parents, the siblings, the grandparents, their friends, everybody's afraid of what will happen to this child, you know. So the support that the support system is, I think, larger than what an adult would need, you know, because the whole system needs to work in place. All who are looking at this particular child, this child should have the best care, this child should have the best treatment, this child should have the best of everything to make the child have the best chance at survival. Thank you. You know, I've told you now, you have already hit me a big time, so this is childhood cancer period for this month, and we actually have the World Childhood Cancer Month in September. However, we have to recognize the closing the Kegap for the cancer children. For this reason, I want to, if we look at the mortality rate in Nigeria, it's a lot. Yeah. When ordinary cancers, just everyday cancers, before we add on the challenges with children, and no matter how we see it, religion is not my portion, money. One of the things I will accept is that globally, the money issue is fixed. I think it's a global issue, so global concern from based on my research lab, you see, when you are in something, you start to know what's going on. If given a blank sheet of paper, and I ask you now, give me three requests that you want the government to look at. This is a period of change. We're in a period when our electoral changes system, and you want them to say, look, we are still here, which is my campaign, right? What would you say? Can you give me four, three? And I, when I say three, I say for a patient, for the advocates, and for the medics. So those are the books of people that we work with. I think, basically, for the patients, I know that elsewhere, the treatment for children are either subsidized or taken care of by the government. So I ask that the government do the same for our children. I'm not talking about the type of subsidy, or, you know, saying that treatment is free, but then there is nothing that is in the pharmacy, you know, because we have this practice where they say that the treatment for children are free. The way you get to the pharmacy with the price for this drone is not there. And that makes it so hard, because parents will now have to buy out of pockets, even gloves, syringes that is needed for these children's hair. Government must have the political ways to help these children. Yes, it's not something that is affecting adults. And because it's not affecting adults, you can see the children are property. As a matter of fact, I went for a conference, a cancer conference, and we maybe go to them and was like, yes, this disease is about breast cancer. And because we love our mails, talk about positive cancers. And I was like, okay, so how about the children? You know, I've been to a government interview, talk about childhood cancers, and they were like, okay, the money that they will use to treat 5,000 children with malaria or diarrhea disease is what they need for one child that has cancer. My ogre then was like, this would understand that that one child is as important as the 5,000. And it is because it is not their child that are talking that way. Now, the healthcare system, we are great people. We have so much knowledge here. We are still going out and doing training and training to make sure that we give our children the best. To encourage doctors, nurses, nutritionists, you know, to have more and more training and training. And then at the classroom level, family healthcare systems, to teach the healthcare workers there, the science and symptoms, so that once they see anything that looks like it may not be but it looks like they should have the primary mediatheque and refer that child as soon as possible. So that child can have the best possible care, even if it is childhood cancer, you know. So these are things that I would want us to see. And then of course, the parents, like I said before, let them have job security even at the end of their treatment. One of the things that we are looking at is to have these drugs made in Nigeria, so that the expense of having to import the drugs will be removed, you know, getting quality health medicines made in Nigeria would give us a better chance at survival too. Dr. Nekha, I want to say a very big thank you to you. I think this conversation is going to be something we will hopefully continue. We've still got World Childhood Cancer Month in September and maybe we will take it a bit more. Maybe we will have to work towards making that a time to really bring this back into the limelight because, gosh, I can't even talk about that because, you know, I live with the disease. I want to say let's thank you, Doc, for joining us this afternoon. Thank you for your time. Thank you for just sharing with us, you know, just a small bit that you shared. I think a lot of parents will actually be very sad to realize that is this what this is all about, you know, when you take things for granted and we don't know. We appreciate the management of Plus TV Africa for sponsoring this cancer awareness in Nigeria and to all our viewers, we thank you for sharing the cancer episodes and all our programs because the more we talk about it, the more people get to understand. Knowledge is very powerful. I don't think a lot of people realize that together we fight, together we win. You can join us on Komod Cancer Foundation Instagram page. I think we have a WhatsApp group. It's called Cancer Awareness. I think it's called Cancer Awareness. Anyway, we have a WhatsApp group on Facebook. Just check us. YouTube has all the videos. So this video will go on immediately after the end of this. In the next few days, you should see it on for you to actually share it with other people and let people get to be more aware. Doctor, I want to say thank you. Thank you. Thank you. You can't imagine. You just educated me. See, this is one of the things I like about this. You all educate me. So thank you all for joining us this afternoon, this morning, this evening, whatever you are in the world. Thank you and thank you. Close to you.