Beyond The Fight: Cancer In Children
Mr Godwin Agu stares into space and closes his eyes. For a brief second, he is oblivious that I am there. As soon as he opens his eyes, he says, “Only God will pay them (Mrs Nneka Nwobbi, and the Children Living With Cancer Foundation) because I slept in that hospital on the ground for over seven months. God brought someone who helped me financially and otherwise. I don’t know what I would have done.”
His daughter, Kenechukwu was five years when he arrived home to hear his wife complain that their daughter “was not looking normal.” A noticeable boil had appeared on her body, but because it didn’t inflict any pain on Kenechukwu, the hospital was not the first port of call. Until that evening when, the food she ate, rather than digest, made her stomach bulge.
A doctor’s insistence on taking her to the hospital for tests opened the Agu family up to the fact that had befallen their first child: cancer of the kidney.
But Mr Agu had spent all his resources. Having just recovered from a stroke and sold off his last property, it was difficult to continue with the treatment after the second chemotherapy for a treatment that was to “last six months”. Hoping for a miracle, he retired home.
Help came in the form of Dr Nneka Nwobbi.
One donor at her foundation, Children Living With Cancer Foundation (CLWCF), had just sent in funds, and Dr Nwobbi needed to use the funds to pay for a child’s treatment. Now healed, the 8-year-old Kenechukwu, who has passed her Common Entrance examination, is waiting to start secondary school.
Olaonipekun Timothy, 21, is the third child of his father. Since his mother’s death, his father has been bearing the emotional burden of ensuring that Timothy enjoys the best he can give. Unlike Kenechukwu, Timothy didn’t know that he had leukaemia until 2002 in Junior Secondary School 2. He and his father continued to treat malaria before he headed to a hospital where Timothy was diagnosed with leukaemia. Treatments began immediately with Dorcas Cancer Foundation and CCII lending support. In 2015, just when they were about to heave a sigh of relief, cancer struck again in November. This time, more malignant. Even the doctors were surprised.
”This time around, they thought it was an infection because he has finished his chemo, done his bone marrow, but later saw that it was another cancer and this time, Hodgkin lymphoma cancer.”
It saw them stay for another chemo with the help of De Nwobbi for another six months. While this was going on, the Jss2 student attended school and graduated. Today, Timothy is studying Electrical Electronics engineering at a Federal Polytechnic.
The Children Are Not To Blame
Dr Nwobbi, a resident doctor at Lagos University Teaching Hospital (LUTH) in 2002, was on call when a man with a boy aged 2 years 9 months old walked in. After explaining his history; fever, frequent blood transfusion, bone pains, abdominal swelling; her advice to carry out further tests were met with indignation. “The man was so upset that he made to hit me. He said,
“How can they bring half-baked doctors to LUTH? Why would you say that my child has cancer? And I said, ‘that is not what I said, I only want us to investigate.’”
Her suspicion proved right. The child had leukaemia. She became so attached to the boy that they both looked forward to seeing each other every day. After he turned 3, his father couldn’t afford to continue the chemo every three weeks. The baby passed a day after returning to continue.
“It was agonising for me because I had grown fond of him. At that time, what he needed for the treatment was about 35000 naira, and he couldn’t afford that.”
So, when another family from Sierra Leone came and was faced the same fate, this time unable to afford N53000, she sought for cancer charities to help support but found none.
“We got N47000, made the payment, and appealed to the CMD to forgo the balance.”
This action birthed the CLWCF.
Not finding any cancer charity was the beginning of her exposure to the level of awareness of childhood cancer in Nigeria. As she tried to educate people, she looked to them as a fraudster. This spurred her to carry out a survey that put into full perspective the obstacles she was going to face. The survey revealed that 9 out of 10 parents who had children with cancer were not aware of the term or the condition, while the remaining one either knew it or had heard of it but did not associate it with Nigerian children.
She had another surprise waiting for her.
“I went to other charities, particularly breast cancer, and some of them saw me as a competition which surprised me because the difference between childhood cancer and breast cancer is so vast.”
These obstacles did not deter her. Pregnant with her last child, she informed her husband of her decision to quit LUTH and focus on her charity. With full support from her husband, she was ready to face the world. “And I said to him, ‘you know that I won’t be bringing any income’, and he looked at me and said, ‘your money has always been your money, and it will not change’. You can leave if that is what you want to do.” As soon as she started, she kicked off with the first step, awareness.
“Most of the children that came in were not making it, and they were not surviving because they came in late and if there is no awareness, they will come in late, so it was the most important thing to me.”
With even more support and sponsorship from her family and a few believers in her new passion, she continued to strive.
But with this came another dilemma.
“Sometimes, you’d get a call that about three children need drugs or money, and at that time, you need to play god. You look at a child’s prognosis and the amount of aid that that child needs. If one of the children has a better chance of survival, what do you do? Sometimes, despite the doctor’s result, the child with little chance of survival can still survive.”
She now uses advice by her religious leaders: to divide the money or do this on a first-come, first-serve basis.
Nwobbi is happy that children have a reason to live their dreams, after having contributed to this. Together with a Matron, Okoro, who heavily influenced her life, her foundation has introduced birthday celebrations. She says with delight that children look forward to these parties.
“Even when some of them are discharged, they will refuse to go home that day until the party is over.”
Besides this, there is another advantage: emotional support to the parents. Older parents inspire the new ones, viable drugs are shared, parents console each other, and everyone goes home with information. Having had a scare herself, she understands what the parents go through and the need for emotional support.
The Burden On The Bearer
Since she started working with children, she has seen things from their perspective. From children who have been abandoned by their parents, to those showered with attention, all have a common concern for their parents.
‘’Most of them are so scared of telling their parents anything for fear of hurting them, so they bottle all their emotions. They know how hard their parents have fought for them. They will tell me something and say, ‘but don’t tell mummy, I don’t think she will take it well.’ I think even when they are being used or blackmailed, they are still concerned about their parents.”
Like Timothy, he thinks about father and the stress of ensuring that he is well.
“There are times I think about my younger ones. I say, ‘he is supposed to be taking care of them’ And his business [rental services] is not as solid as before.”
Nwobbi recalls a time when a man asked her for a DNA test, and a woman told her daughter to kneel to beg her husband to release her from the spell of cancer, and another who threatened to leave the body of his child if she didn’t come to foot the balance of the bill at the morgue.”
It is not only the children that are affected.
“I keep saying that cancer in children affects not only the child but their siblings. Some are scared they will lose their siblings, some fear that it is because of a fight they had or their wishes that came to pass. And sometimes, the siblings get jealous that the child is always favoured because they don’t sweep or do house chores.”
Has the government been of help?
The Lagos state governments of Fashola helped with the sponsorship of a child; Ambode took it up a notch by sponsoring their stage productions, each stage production, telling the tale of one of the children, to create awareness. Since the new government took over, they have not had any support.
Rather than dwell solely on this, there have been attempts to seek support outside the country. Their education on the strategies to get access to funding is the same: Solicit for funds from the public. But this has not been successful, “especially now that there is COVID, it is very difficult, [we survive on] personal funds, press briefings and the few monthly donors.” Yet, she is thankful and looks on the bright side of the sun to see what it holds for her.