Cancer is a bully, worse than the playground bully. It not only tries to steal the children’s lunch money but it also steals their future. No parent wants to hear those terrifying words, “your child has cancer!”
When cancer affects a child, no member of the family is spared. Cancer used to be “a disease of the elderly” but sadly it is no longer so – every year thousands of children across the globe are diagnosed with cancer, including in Nigeria.
While many childhood cancers have an excellent prognosis when detected and diagnosed early, and properly treated, this is unfortunately not so in Nigeria. The Nigerian story remains one of late detection, delay in presentation, and poor survival rate.
Although Nigeria has a high number of children living with cancer, Founder of the Children Living With Cancer Foundation (CLWCF), Dr Nneka Nwobbi, who works with many children living with cancer, said Nigeria does not have the data of the children who are battling with cancer.
Despite the burden of the disease, there is no supportive treatment plan for children with such terminal illness in Nigeria and worse still, the burden of treatment lies solely on the families of such patients.
Little Miss Nkechi Okoro, 10, was lively until few years ago when she started to experience constant cold, fatigue, headache and joint pain. Her parents, thinking Nkechi could be having malaria, took her to a nearby pharmacy store and purchased some malaria drugs. But her condition did not improve. When her health condition continued to deteriorate, Nkechi had to be rushed to a nearby private hospital at Ikorodu, a fast developing suburb in Lagos.
After examining her, the paediatrician who saw Nkechi referred her to the Lagos University Teaching Hospital (LUTH) where she was diagnosed of leukemia, a deadly type of cancer. Healthcare providers at LUTH swung into action and got Nkechi back to her feet within a short time.
Unlike Nkechi, a high number of children living with cancer do not survive it. Although Nigeria has a high number of children living with cancer, Founder of the Children Living With Cancer Foundation (CLWCF), Dr Nneka Nwobbi, who works with many children living with cancer, said Nigeria does not have the data of the children who are battling with cancer.
Therefore, it was wrong for parents to assume that children do not have cancer, Nwobbi said. According to experts, late presentation of childhood cancer cases has led to the death of many children in Nigeria.
“Childhood cancer is a big issue, which is not talked much about. Parents are not willing to hear that children can have cancer. And the parents whose children have cancer are mostly in denial. We have had cases of children whose parents, even when the children are undergoing cancer treatment, will term such cancer another ailment.
“It is important we talk about childhood cancer. Parents are in denial that their children have cancers because childhood cancer is a frightening issue, even among adults. Anyone living with cancer thinks death is imminent. But it is not the same if the child is seen and appropriate treatment is given on time,” added Nwobbi
Sharing their experiences with Good Health Weekly at the launch of “Childhood Cancer Handbook Series” written by The Dorcas Cancer Foundation during International Child Cancer Awareness Month in September, there were mixed feelings as mothers whose children have lost the battle against cancer as well as those who managed to survive narrated their struggles, agonies and hopes.
One of such mothers, Mrs. Riskat Titilayo Oshagbemi was in tears when she recounted her experience at the Lagos State University Teaching Hospital (LASUTH), after her son Joshua, aged 10 years, was diagnosed with cancer of the kidneys.
“Since his diagnosis in 2013, Joshua has had 11 cycles of chemotherapy, radiotherapy and surgery. He has had fluid drained from his chest and more scans and tests than we can count but my son still keeps fighting.”
Oshagbemi said in 2015, they spent eight months and 10 days on admission in the hospital and between August 2016 till date, Joshua had received 19 pints of blood.
“Aside from the stress of paying for the tests at one point and collecting the change the receipt at the other end, not to talk of moving from one ward to another and buying the drugs outside the hospital, I have sold all my belongings.
“The only things I did not sell were those things which people were not ready to buy from me. Caring for him made me lose my business. His elder sister has been out of school for a year and a half, and Joshua himself was eager to return to school after three years,” she stated.
Mrs. Obienu Chiamaka whose child, Emmanuel, was diagnosed with cancer at the age of four, recalled that when he began manifesting symptoms of kidney cancer, she didn’t take it serious because she never expected a little child would have cancer.
“I don’t know that children do have cancer, I thought it was a disease of the adult. When he fell down in school, he developed fever and then his temperature would go up in the evening and by morning it would come down”, she said
Chiamaka said when he took him to a private hospital the doctor said it was infection and treated him but after some weeks the condition would resurface and would even become worse.
“He could not eat and was unable to do things that he used to do. He was just lying down and started losing weight while his stomach was getting bigger. In December 2016 Emmanuel was diagnosed with kidney cancer and since then the battle for survival began. Thanks to Dorcas Cancer Foundation that assisted us financially, he is still alive. It is hell caring for a child with cancer.”
While Joshua and Emmanuel are still alive, Dorcas was not so fortunate. Her mother, Mrs. Eriola Adepitan recalled how her daughter (Dorcas) battled with the scourge for three years before she lost the battle.
“In 2012, she complained of pain in her leg after she returned from school and I didn’t take it serious but when her complaint was persistent, I took her to the hospital and after an x-ray, the doctor said she had bone cancer. She was given series of treatments including surgery on the right leg but despite these efforts, she died.”
Also, Mrs Buki Oluwaojebi, mother of late Atinuke, recounted how she died. She said three-year-old Atinuke died in pain.
“We spent so much money, sold all our properties and became almost impoverished. She was taken to India for bone marrow transplant but at the end she lost the battle. For over a year, it was like living in hell fighting cancer,” Buki lamented.
“It all started with fever, and my mind didn’t go to cancer because I could not imagine anything more than malaria for a three-year-old baby. For two months of our consistent visits to the hospital, there was no concrete diagnosis so they placed her on antibiotics for another three weeks before she was later diagnosed at the Lagos University Teaching Hospital (LUTH), and our nightmares began.”
Good Health Weekly also spoke to the founder of The Dorcas Cancer Foundation, Dr. Adedayo Joseph who noted that Joshua and Emmanuel won the battle due to early medical intervention and support. On the other hand, he explained that Richard, Aliyat, Timothy among others would have been alive too, if they received early treatment and care and support.
Adebayo explained that the Foundation has produced three handbooks to create awareness about childhood cancer.
“These books will go a long way into letting them know that they are not alone, and the Dorcas Cancer Foundation is rooting for them, until every single Nigerian child is no longer at risk of dying from childhood cancer.”
In the view of a lecturer from the Department of Paediatrics at the College of Medicine, University of Lagos, Dr. Seye Akinsete, Nigeria still lags in cancer care, arguing that “we still have issues with manpower to provide care, the facilities in management are not available while there is need for robust health insurance.”
Akinsete regretted that children continue to be at a disadvantage when it comes to cancer care.
“The National Health Insurance Scheme, NHIS, includes breast cancer, prostate and cervical cancer but childhood cancer is not included. Between 30 to 40 % of children with cancer has genetic predisposition and over time the environment works on it and it manifests. If your child is having recurrent fever or is consistently treated for malaria or has swellings around the neck, among others, you need to seek medical evaluation,” he explained.
Prof. Ifeoma Okoye, a professor of radiology with the University of Nigeria Teaching Hospital (UNTH), Enugu and cancer advocate, said several Nigerians are ignorant about childhood cancer. The radiologist called for increased awareness about cancer. “The critical thing is to increase awareness, which CLWCF is trying to do.”
“The major issue why cancer is still a big issue in Nigeria is late detection. Cancer awareness is very low and the acceptance that it is even a disease is not there. Cancer belongs to a class of diseases called non-communicable diseases (NCDs) such as hypertension, diabetes. Yet, if one had been diagnosed with cancer, people would start coming to pay one condolence visits. But if a patient were diagnosed of hypertension, the patient would ask the doctor what should I do? But someone with a cancer diagnosis will go to faith-based organisations (FBOs) and babalawo, just about anything but the right thing. This is because they feel that there is no hope. Why is it that people have this perception? The reason is anybody who has been diagnosed of cancer die. Why are they dying? They are dying because they come to the hospital late.”
On how the absence of health insurance for cancer patients affects childhood cancer, Adeseye said:
“For our leukemia patients, we are individualising their care. But it is quite enormous in terms of cost for the parents. For example, for us to make a diagnosis in leukemia, the test we do cost N250, 000.
Most, if not all our parents, pay out of pockets. Insurance care in Nigeria does not cover cancer care. So, we have cases in the wards of children whose fathers have sold their cars, mothers have closed down their businesses and sold off everything so that they can get money to do investigations.
In leukemia treatment, we do cytogenetic at N240, 000 and when we start the therapy, the child will need blood and platelets. A bag of platelet is about N20, 000 and the child may need 10. That goes for another N200, 000. So, the cost just keeps escalating that at the end of one admission, parents spend millions of naira.
Almost always, there is a provider fatigue. By the first or second admission, most parents do not come back. And when they come, they just come for terminal benefits. The child is almost dead and they come because they want the child to die in the hospital and have the benefit of a death certificate to bury the child.”