Dr Adedayo Joseph, a clinical oncologist, is the founder and Executive Director of The Dorcas Cancer Foundation, a Non-Governmental Organisation (NGO) providing succour to children living with cancer. In this interview with TAYO GESINDE, she speaks about the different types of childhood cancer and the challenges faced by parents of children living with cancer.
Why did you decide to specialize in oncology?
When asked this question, I usually replied jokingly that God tricked me into it. I didn’t plan to. As a medical student, Oncology is the last place that most people wanted to be and I certainly didn’t have a desire for it as a student, what I had was curiosity. If you look at most other specialties, you will discover that they had been studied extensively for several years especially in Nigeria and Africa. Oncology was a little bit sort of new at that time and as a student, our rotation in oncology was just about two weeks to a month. I didn’t spend a lot of time there. So, for me, it was an unsatisfied curiosity, I wanted to know more about it. I didn’t have enough exposure and time to really learn about it. And that is how I am, if I find something interesting, I want to follow up, dig into it until I get to the bottom of it. I stepped into it and went on and on. Before I knew it, I was specializing in it.
What are the challenges being faced by health care providers in Nigeria?
The most common challenges for any health care providers in Nigeria are equipment, facilities and resources. There are things you will like to do but the support system you need to achieve those things are lacking. If I have a patient I want to treat now, I know what to do, however, there certain things I need, for instance if the patient needs a bone scan, PET scan or a highly technical procedure like a sensor transplant, those things are difficult to access in Nigeria and Africa. Even radiation therapy which is an integral part of treatment in oncology is difficult to access. Right now, there are two or three radiation centers in the country and the cost is high. It might not seem high if you compare it globally but it is high for an average Nigerian. How many people have N500,000 or N600,000 to spend? Also, as a health care provider, knowing that I can help a patient but I lack the resources to do it can be very frustrating.
What is the most defining moment of your career so far?
That was when Dorcas died. She was the little girl the foundation was named after. She was a patient I met as a resident doctor. She had osteosarcoma and she passed away, I didn’t know how much she had gotten to me until she died. I felt a wave of grief and pain because I knew what her mother went through. What pained me the most was that they had done the right thing. She was ill, her mother brought her to the hospital but the health care system failed her. We failed to detect the cancer early enough to save her. It was then that I decided I can’t just fold my hands; I must do something about it.
Was that how the foundation started?
I never intended to start a foundation and run it. I wanted to help one child and some challenges came up along the way. There was a child I had raised money for and the family collected the money and absconded. I never saw the child again. After that I started asking people to donate the money to me so I will be able to control how the money is spent as opposed to giving it to family members. Then, the issue of accountability comes in; one of the most important things to me is integrity, I don’t want anyone to ever question how things are being done or money is being managed so I needed to open an account where the money can go and anybody can have access to it and audit it. In order to do that, I needed to register a foundation and that was how we started.
How has the journey been so far with the foundation?
The foundation is doing pretty well. It is just three years and we have a fantastic team. I am not the most important member of that team because I have several full-time jobs. There are people who are there every single day doing the job with me. The only thing I bring to the table is motivation and some expertise. We have treated at least 20 children and right now, we have 13 children on active treatment. We have about five children who are survivors and who we are following up daily. We have also lost a few along the way. Another thing we have done is to publish a handbook on Childhood Cancer in Nigeria, the first of its kind and recently we launched a research grant. We have had events to raise awareness of Childhood Cancer in Lagos, Ogun, Osun and Oyo states.
What are the causes of childhood cancer and how can one prevent it?
It is difficult to say the cause of any cancer, except for cancers like cervical cancer where the causative organism is clear. It is difficult to say the causes of many of them though there are things that predisposes them. With childhood cancers, they are mostly genetic and have been formed from when the child was inside the womb so there is really nothing that one can do to prevent it per say. The only thing we can do is to pick it up early. When childhood cancer is detected early, the prognosis is excellent. We have some cancers that have survival rate of 90 per cent and more in developed countries but we have children who are still dying from these cancers here so what we can do is early detection; make sure the cancer is picked up early; the child is referred to the right place for proper diagnosis and they are treated properly and promptly.
Types of childhood cancer in children?
There are different types of cancer in children but one of the most common is Leukaemia which is cancer of the blood. With Leukaemia, you will find a child who has easy bruising. Children fall all the time when they play and bump into things but when you see a child who seems to constantly get bruised, who has a small cut that won’t stop bleeding, who is always getting tired, who keeps getting infection repeatedly, that is the time to look out for Leukaemia. Also, any kind of mass in any part of the body. A mass in the abdomen can be a womb tumour which could be the cancer of the kidney, neuroblastoma; cancer that arrives in the nerves; it can be anywhere but it is most common in the abdomen. Other masses can be lymphoma, that is, when you have limbs swelling; you can have a cancer that begins in the bones; bone pains, swelling and bone breaking even from a minor fall.
Talking about early detection of cancers. What are the signs that parents should look out for in their children?
When a child is ill, it is pretty obvious. They cannot pretend. What I have found is that even the uneducated mother will take the child to who she considered to be a health care professional. What then happens is that when the child gets to that health care professional, she is treated for malaria, typhoid fever or infection. It is actually the health care provider who does not think to look for cancer. The truth is that with a child, the first thing you will think of is not cancer but things that are common like malaria and typhoid but when this child comes back the second time, third time or repeatedly, it is time to look deeper. That is why at the foundation of we have what we call; ‘’Look Again Project.” So as a mother, if you have been to the hospital repeatedly and the child is not improving get a second opinion. Ask for referral to a consultant paediatrician. Don’t keep going to the same place to receive the same treatment.
From your experience, what challenges do parents of children living with cancer face?
This year, we started having support group meetings with parents because they face a lot of challenges. The common denominator for most of them is funding. Treatment is expensive as a foundation; we spend an average of about two million naira on a child to cover tests, CT scan, MRI scan, chemotherapy, radiation and surgery. Many people can’t afford it. Also, a parent whose child is sick and is spending a lot of time in hospital cannot work. They have to leave their businesses or shops unattended to so there is no income coming in yet they are spending more money. There are other challenges. Right now, there is no dedicated childhood cancer centres in Nigeria, there are units or departments but no dedicated hospital that specialises on childhood cancer alone, and now, they have to make do with facilities tailored for adults. Another challenge is information; many of them don’t know where to go or who to talk with. At the foundation, we have information centre where we provide relevant information to those who need it. Being in the hospital itself is a challenge because there is a lot of bureaucracy in getting things done. That can cause distress for a parent whose child is in pains.
How do you source for fund?
My experience has shown that if you have a genuine cause for funding people will support you. When people see what you are doing they are happy to partner with you in different ways to get the work done. We are 100 per cent accountable to our partners. We are audited every year by a reputable firm and the reports are made available to everyone who works with us. So, people are always happy and willing to partner with us and they even invite others to join the cause.
Working with children living with cancer could be quite tasking. What keeps you going?
It is because I am very emotional that I was not able to look away in the first place. That is why I ended up doing what I am doing. However, whenever we have survivors, I feel very happy. Recently one of our survivors graduated from primary school after losing two years in the course of treatment. The fact that he graduated and we were able to attend the graduation made everyone of us happy. Looking at the pictures brought tears to my eyes, it made me feel like I am not wasting my time and what I am doing is valuable. That is what keeps me going on the days I am frustrated and tired.
What do you find most interesting about your job as a doctor?
My favourite part of being a doctor is making a decision that helps to make someone better and helps to save lives. It is to make a treatment plan and see that person come back months or years later doing well based on the decision you made.
How do you combine your career with the home front?
I have an excellent support system at home and at work. I have people who work with me; who help me to achieve my goals. Honestly, without them I couldn’t do anything. I have a great nanny and my husband. My husband makes life so easy for me.