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Children living with cancer: Alive today, dead tomorrow?

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By Chioma Obinna

Mariam Yusuf, Ebuka  Agu, Timothy Ola Onipekun and Oluwatofunmi Adebayo- ordinary Nigerian children are bound by a common destinyunder an extraordinary situation. Born with cancer, they are living with cancer, but not hoping to die with cancer. In their own words, and unlike other Nigerian children whose birth brings joy and laughter, theirs have brought nothing but sadness and tears.

“We do not know why we were born with cancer. Did we or our ancestors wrong the gods? Even scientists have no acceptable explanation,” they ask. “Thousands of us are born every day. Right now, we have no idea how many we are. Our plight is overshadowed, perhaps because no one understands what we go through. “We have suffered much and for long, and now, we wish to let the society know what it is like to be a child living with cancer in the hope that this will bring us attention and succour.”

Mariam-and-mather-on-malariThe cancers that affect these children vary from leukaemia (cancer of the blood), lymphoma, and brain cancer. Teenagers among them suffer from osteosarcoma (bone cancer).Others are Retinoblastoma and Burkitt’s’ lymphoma. Doctors say the causes of childhood cancers are usually not the same as in adults.

Genetic conditions such as Down Syndrome, can sometimes increase the risk. More pathetic is the fact that childhood cancer spreads and kills faster.

Sometimes symptoms come up as fever, swollen glands, frequent infections, anaemia, or bruises. To give deeper insight their plight, each gives account of his or her personal experiences. For Mariam Yusuf, the journey has not been palatable. Just as this paper went to bed, news of her demise was circulated.

Before her death, she had been lying helplessly for weeks at the Lagos University Teaching Hospital, LUTH, not knowing what tomorrow had in store for her.

Marian was once quoted as saying: “Every minute, I cry not only because of the pains but for my young and confused mother who has been abandoned by my father few months after my diagnosis. I cannot go to school anymore,” she laments. Mariam’s mother, Ballikis Yusuf, said it all started in 2001 when Mariam’s school mate hit above the eyelid and the eye bled a little.

“We took her to the hospital and doctor requested further test. A month later diagnosis of cancer was confirmed. We were in shock because we never knew that a child like her could have cancer. Her treatment started at the University College Hospital, UCH Ibadan from where we were referred to LUTH. “The family has practically lived from hand to mouth to see her through with the treatment. Unfortunately, my husband who actually started with me after spending close to N2 million ran away and abandoned us.

Since then, through the help of my family and good spirited Nigerians we have been able to attend 38 courses of chemotherapy. Unfortunately, when we were on the verge of defeating the cancer, we ran out of money between January and March and her condition has worsened.

Worsening condition

“I feel helpless watching my daughter writhe in pains. Now, she is starting the chemotherapy all over again but Mariam is not feeling any better. The growth has covered her face. All she can take is water through a straw.” Mariam’s Uncle, Idris Azeez said although she has been transfused with five pints of blood, two pints of the blood came out from the bad eye.

“We have spent more than N6 million but it’s not even near enough. One of the required drugs called GCSF, costs N27,000 per dose. At times she uses up to five doses in addition to other drugs. At no time have we been to LUTH without spending almost N500,000. The wife of the Governor of Kwara State sent N220, 000 once, but we require much more. I’m appealing to Nigerians to come to our aid.”

Timothy – Living with Leukaemia

Timothy’s story is just as heartbreaking. His mother died almost the same time he was diagnosed of cancer, then his father, who lost his job, now begs to keep him alive. Living with Leukaemia has shattered the family’s dreams. They want Nigerians to rescue them from the financial, emotional and psychological burden of childhood cancer in Nigeria.cancer-of-blindness

Timothy is currently at LUTH and even though has been discharged after the last chemotherapy, but his parents cannot settle the N170.000 bill. Muyiwa Ola Onikpekun, Timothy’s father practically begs for alms to ensure his son’s survival.   “Many pharmaceutical outlets around LUTH know me because when I don’t have money to bhuy the prescribed drugs,I go from shop to shop begging for credit which I settle as sonn as I can.

“I never knew children also had cancer. When I was told in Abeokuta that my son had cancer, I thought it was not serious. It was when I met the consultant at LUTH and was told I needed close to N4 million that the truth dawned on me. I was weeping before the consultant. I had only N12, 000.00 but a friend sent N30, 000 with which he was admitted. Friends have been supporting with any amount they can afford. That is how we have survived till date.

“Three months after we lost his mother, we discovered he was having fever, cold, swellings. He was on TB treatment for about 10 weeks before it was discovered he had swellings in the armpits and groin area. The laboratory test showed that it was cancer of the blood (Leukemia). We were referred to LUTH. That was November 15, 2012.We were there three months.

We are now on the last phase of chemotherapy. Each cycle is 12 weeks and total of 120 weeks. By the grace of God we are on the sixth course but the challenge now is the finance for the maintenance which is the last phase. “He is on daily drugs. One of the drugs is sold for N6, 000 and within 40 days that expires and you move to another one. Each course contains about 84 days. Another costs N2, 500, weekly and the food he eats everyday must contain fruits and others.

“Sometimes a session of treatment costs about N50,000. Blood donation is a challenge and you have to pay for N5, 000 for the screening. We have spent over N4 million to date. Muyiwa laments that his son’s condition has affected the care of his siblings. Two of his other children that are undergraduates are forced to make sacrifices on their brother’s behalf. “Having a child with cancer, you cannot keep a job because sometimes you end up spending four months in the hospital at a stretch.

I have quit my job and now run a rental service. Even now, nobody is taking care of my business as I am always here. “We have tried our best to do bone marrow transplant. I have written my State government but nothing is coming out. It is unfortunate that future leaders of Nigeria are suffering this way,” he remarked.

Oluwatofunmi – An uncertain future

Oluwatofunmi Adebayo, once the pride of his parents, now has an uncertain future. His hope is to rescue his future from the clutches of cancer. “Every day, I watch my parents go through emotional torture and I feel bad. My sister cannot sit for her exams because my parents sacrificed her education for my health. Lymphoma has stolen the joy in my home.

My mother who initially thought that being an enrolee under the National Health Insurance Scheme, NHIS, programme would reduce our financial burden received the shock of her life when she was told NHIS does not cover cancer. So what does NHIS cover? In the views of his mother, Omolara Adebayo, the nightmare began early 2013 when her son presented with consistent high temperature and a swollen neck.

“I felt it was just ordinary malaria I treated him and everything subsided. It came back again with high fever on January 15, 2014 and swollen neck. “We were almost misled as people were telling us it was not hospital thing. But at the medical centre where we first treated him they were suspecting Lymphoma. After series of tests they were able to eliminate TB and confirmed it was Lymphoma. Treatment began February 2015.

“I weep every day in my closet. Financially, it has not been easy. At a point I had to run to my school to raise money. Fortunately, I met the founder of Children Living with Cancer Foundation, Dr. Nneka Nwaobbi who has been buying chemo drugs for us. Omolara recalled that the last time at the hospital, her husband had to sign an undertaking because they had no money for the test.

“He has now taken two courses and half of chemotherapy. He needs six courses. The situation has affected everybody in the family. We can’t pay his sister’s school fees and still owe N61, 000 and she will soon be writing the Basic Education Examination and NECO.”

Ebuka – Blinded by cancercancer-children

Only a 3-year-old, Ebuka Agu has no guarantee what the future holds or if he would see his fifth birthday. At four months, he was diagnosed of cancer of the Retinoblastoma (cancer of the eye). Today, he has no eyes, is not in school and cannot play with toys like other children.

His treatment has stopped because there is no money to continue. Christopher Agu, Ebuka’s father could not take it when he was told that Ebuka, at four months had Retinoblastoma.

“It was the greatest shock of my life, a four month old child with cancer? Being told by doctors that the eye was to be removed further compounded my confusion. I left with my wife and child because the surgery and treatment cost were out of reach.” Christopher who lamented that the challenges have been enormous, regrets being forced to neglect his older children.

“It all began when we noticed his eye was shining so much like a cat’s eye. We abandoned treatment at LUTH then because of high cost and moved to Owerri where the scan was done for N1, 050.00 but here it was N16, 000. Afterwards, we were also referred to Teaching Hospital in Enugu. We were there for three months but could not do the surgery because each time the surgery is scheduled, the baby would begin running temperature.

The surgery could not be carried out. We asked for referral back to LUTH where the operation was carried out. But by then, the second eye was already affected. The doctors wanted to remove the eye but I refused and we went home with the boy.” But two years later, Ebuka was brought back after the eye ruptured and actually fell out. Further, Christopher stated that what the family is facing now is the challenge of blood transfusion and chemotherapy.

“God has been using Dr. Nneka Nwaobbi and we are now on the 6th course of the chemo and they said we need nine courses. My worry is that the boy cannot see, he is not in school, and we have other children to cater for. On this particular admission we have spent almost N170, 000 and I could not pay. The doctors have discharged me but no money to pay for my clearance.

“We are not coping. Here in the hospital you see many children with various infirmities if their families have no money they will die. If I had money when Ebuka was four months old, he would not be blind now. To take care of a blind person is not easy. Government is not doing well for children here. I am not happy. “

Parents can’t cope – Dr Nneka Nwaobbi

Founder, Children Living with Cancer Foundation, CLWCF, Dr. Nneka Nwaobbi, laments that many children living with cancer have died because their parents could not cope with the treatment cost. “Overseas we have up to 80 to 90 percent cure rates. In Nigeria we have less than 20 percent cure rate. Why? It is not because of man power or facilities but ignorance. Many people do not know that children can have cancer. By the time they come in nothing much can be done only palliative treatment. The only thing we do here is to ensure that these children do not die in pains.

“Cancer drugs are not made in Nigeria. The cost of bringing the drugs remains a challenge. Treating a cancer patient in Nigeria is more costly than treating it in a place like India.   India pharmaceutical companies are licensed to make oncology drugs we are not. They fought hard for that. They fought had to manufacture their generic drugs and manufacture in their country. Why can’t the government give us that tool to be able to manufacture the drugs here in Nigeria?

“Another reason why we see high death rates in childhood cancer is the fact that most government hospitals do not treat children free of charge. For Federal government hospitals, the minimum amount the children aged 12 and below pay for admission is about N13, 000 a week. How many families can afford it? The minimum wage is N18, 000. By the time you are removing N13, 000 from N18, 000, that is just for a week. If the child is above 13, the child pays adult fee of almost N75, 000.

If we can actually take away these admission fees and the treatment costs, it will help get more Nigerian children seek help early. It is very sad. If we treat our future leaders this way what will be the fate of this nation? Most deaths are caused by parents’ negligence. Some don’t come for check -ups. “Child cancer does not only affect the child but the whole family because a parent or older person must stay with the child in the hospital while receiving treatment. It is not a day off thing. Especially at the beginning when to make diagnosis will take up to a month or two.

During that period a parent absence at home will cause havoc and other siblings will be wondering why the child is not eating what they are eating or do other domestic chores,” she added. Families of these children are exposed to a lot of danger. There is this particular family, the husband is a long distance driver and when the child is with the mother in the hospital, some of their neighbours were trying to rape the oldest daughter at home because nobody to protect them.

Some of these families break up because the stress and the strain the mother is not always there and the father will start looking elsewhere for companionship or blaming the woman for bringing a child that has cancer. Sometimes the woman blames the for not being able to cater for the family. Also in his contribution, Consultant Paediatric Haematology Oncologist, LUTH, Govt isn’t supporting enough – Dr Edamisan, Temiyedocs

Prof Edamisan Temiye, a Consultant Paediadric Oncologist and Lecturer, College of Medicine, University of Lagos, said childhood cancer spreads rapidly and kills faster than adult cancer.. Re-echoing the challenges in Nigeria, Temiye said the first is the denial and the ignorance that children do have cancer.

“Sometimes they look at the doctor as if he or she is possessed. And because cancer in children grows very fast they go for one or two months by the time they come back it become incurable.

“Sometimes you see a family running around treating a child the parents lose their jobs. Maybe at the end of the day, the child may be dead and the family will be impoverished.” Temiye pointed out that government has not been supporting childhood cancer. “What we have all over the place is breast cancer, prostate and cervical cancer and these children die quietly with their families impoverished.

“The facilities are also not available. To diagnose is a problem. You need to make quick diagnosis of these cancers. To get better result, you need to properly classify those cancers, doing genetic mapping etc which is not available in the country and when you try to do them abroad, the cost is enormous. And this is what has improved care of cancers in developed countries.

“In LUTH alone, we see an average of 70 to 80 new cases of children with various cancers annually. Success rates are just marginally improving because they are presenting late and some of them will start treatment and they are getting better, they will just disappear because the patient cannot afford the cost of next chemotherapy. I remember one child she was doing well. And the mother said the chemo that time cost her N400,000 and that the next one will cost her about the same amount she had no money. They never came back.

The cheapest cancer is if the child has cancer of the eye of the kidney. By the time we finish the treatment in about six months, the parents will be spending about N1 million. That is a lot in a country where the minimum wage is N18, 000.00 per month. If you go to blood cancer by the time we are finishing treatment in two and half years, if it’s a girl or three years if it is boy, you must have spent N8 to N10 million.

“Unfortunately, Nigeria has no national statistics for cancer. Efforts have not met the required successes and that makes it difficult for us. We should have a national database from infancy to adults for us to see how we are doing,” he stated. Despite the sorry state of cancer treatment in the country, the government is yet to take cancer as a serious business as it is done in developed countries. Experts say that as we are eliminating preventable causes of illness and deaths, and improving in saving more lives from preventable diseases and infectious diseases cancer will become more prominent.

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