When Cancer Struck

A few days to Christmas of 2015, we had just treated my son of what we thought was an infection, but wife called my attention to the fact that he was still weak and couldn’t stand for long.

On the 26th of December, we went out for a family outing at a nature park, that was when I noticed it for the first time, my son was afraid. He was scared of climbing a ladder. Something I knew that I should be chasing him away from. Now he didn’t want to climb, because he was afraid. Or so I thought.

What I misdiagnosed as fear was actually something called gait imbalance. It got worse as the year came to an end, and first thing in January 2016, we went to an hospital. They referred us to general hospital and we were asked to do a brain scan. (CT Scan). The result showed a blockage of the CSF (Cerebrospinal fluid). We were referred to LUTH, and because the whole place was filled up (story for another day), we decided to go to UCH. It was January 7, 2016.

After months and months of tests and scans and more tests and more scans, our worst fear was confirmed. My son has been diagnosed with a type of cancer. It’s called Diffuse Astrocytoma. It was a WHO Grade 2 cancer. I was devastated. We prayed. And fasted. And prayed some more.  But it’s cancer, and it’s not going away.

Our options were laid bare before us. Radiotherapy is not advised because of the diffuse nature of the cancer as well as the extent to which it has grown. Our only option is chemotherapy.

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They recommended lomustine in conjunction with other drugs. We were able to get the other drugs but no pharmacy stock lomustine in Nigeria. I combed the whole of lagos and Abuja and couldn’t find. We decided to explore our options outside the country and still couldn’t find. At some point we found in Ireland, but they won’t sell to us. They require a doctor’s prescription, and the hospital must be in Ireland. Same with Poland and then US as well. We searched for a doctor/hospital that will help us, but they want us to bring the boy to their clinic before they could write a prescription for us.

 At this point, having a comprehensive health insurance could have helped, but cancer would be the last thing on my mind, not even for a 3 year old. I know better now.

After a month long futile effort of trying to get lomustine, we decided to go with the second option of some combination of vincrinstine. That didn’t do anything to the tumor. In fact it was growing. So we did other set of scans and x-rays and tests. At this point we decided to fly him out. Maybe the Nigerian doctors don’t know what they’re doing. So we started another round of fruitless searching. We met with genuine people trying to help. We also met with fraudsters trying to dupe. All in all, the efforts yielded nothing. Well, nothing,  Until I met a doctor friend who summoned courage and told me the truth. ‘Don’t waste time, energy and money. The best thing you can do now is give your son palliative care and be as close to him as possible. He is possibly in his last days’.

Harsh truth. But truth nonetheless. That was 6 months ago. During those 6 months we didn’t give up on him. I personally was hoping for a miracle, I read every cancer news with hope that someone would find the cure before it’s too late for our son. Medically,  we did a shunt to reduce the ICP (Intracranial pressure), we continued with chemotherapy, we tried different drugs combination,  we kept trying to get lomustine, and we didn’t give up on the idea of flying him out as well. We did everything we could.

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The hardest part of dealing with cancer is watching your loved one suffer and not being able to do something about it. The second hard part of it is watching it tear the family apart. The last one year was the most difficult for me and my family. The third thing about cancer is it’s expensive to manage. We were spending over 200K every month on drugs, consultations, tests, scans, etc. To fly him out to india would require us to have cash of about 10M and another 10M in reserve.

The new chemotherapy wasn’t working either. So we decided to stop. My wife told me of a professor with some sort of alternative native portions. Although I don’t believe in it, I gave her the benefit of the doubt. At this point, we were ready to try everything, as long as it would work. This new therapy will cost us about 25k every 3 weeks or so. It also wasn’t working.

The first sign of the cancer was the gait imbalance. At some point he couldn’t even walk at all. His left arm was so stiff he couldn’t bend it. So we started physiotherapy. The physio yielded some gains, and after a while he was actually able to walk, with a little imbalance and up till about 3 months ago, he was able to eat by himself.

But then cancer is really a bitch. after some time, he couldn’t walk again. But could sit and crawl and eat. Soon he couldn’t open his eyes properly and then he started having speech impairment and finally he couldn’t speak. All he could utter was grunts. I think the point when he couldn’t speak anymore was the point it finally broke me. I broke down many a night and cried myself to sleep. All these happened in the last 6 months leading up to February 10, 2017.

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One thing about this brain cancer is that it didn’t take away all brain functions, just those associated with movement. He wakes up in the middle of the night sometimes and start singing. When we stopped the chemotherapy and left UCH, the nurses were almost in tears. He was such a sweet boy. At just 3.5 years old, you’ll hear him say things like can I have a cup of water please!

But once he couldn’t speak again, he became a totally different person. I can sense that he was depressed. And that hurts. Deeply too! Watching a 4 year old go into deep depression is hard to take. He’ll stare into space for a long time and heaved a heavy sigh. When you’re trying to talk to him, he’ll be starring at you, but not really seeing you. It’s like he’s looking through you. He became secluded. He sleeps. Sits. Eats. And stare. I couldn’t imagine what was going on in the brain. Sometimes I hold his hand and I could feel him squeezing my hand as if he want to tell me something, but I could only imagine what is it he wanted to say. I missed the shout of Daddy!!! whenever I come home.

 At times he’ll try to stand up, but he’ll just fall back down. Sometimes hurting himself in the process. So gradually he stopped trying. A 4 year old shouldn’t be going through this, but here’s one, my son, going through one of the worst times of his young life.

 I cried at every moment I get to be alone. I cried in the car. Everytime I remember him, tears well up in my eyes. I can only imagine what my wife, the mother was going through at the time. I became absent minded. I lost at least 3 phones during that time. I lost my wallet once. I almost lost my job as well.

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I once traveled to Sierra Leone for a business meeting. He was supposed to be in the hospital for chemotherapy the day after I was supposed to arrive. I got to the airport at about 12am, on a good day I would have just slept at the airport, but I had to be with them the next day, so I entered my car and was driving home. Half way home, I was stopped by armed robbers parading as policemen and I was robbed. They took away money and valuables worth well over $100K.

At this point, I should say a big thank you to my boss and coworkers. They stood by me during this time. I was refunded about $10k for my personal belongings that was stolen. But company properties worth over $100k could not be retrieved till date.

Finally, during the week of February 6th to 10th, I had some urgent deliverables so I was working late. On the night of February 9th to 10th, I worked to about 4am. I was about to sleep when my wife called me,  (they were in ibadan and I was in lagos) she said the words I’ve been dreading to hear everytime she called me. Opeyemi is not breathing. With teary voice she said, he’s gone. Our son is gone.

All week he’s been having serious symptoms. Difficulty in breathing, coughing, restlessness especially at night, etc. And on the 10th of February 2017, 1 year, 1 month and 3 days since the first time we checked into UCH, my son succumbed to cancer and took his last breath.

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I came out of this whole ordeal stronger I think. During those early days I read everything I could lay my hands on about cancer. I watched videos and I got educated.

A big positive and major source of consolation for me is that he has gone to rest. He suffered a lot during those 13 months. He was a fighter. He fought cancer, but unfortunately he lost the battle. He will forever be remembered. Even though he spent just 4 short years with us, the lessons his life taught us is eternal.

Goodbye son, you’ll be greatly missed.

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3 Comments »

  1. Maryanne Folarin said

    I am angry, I am angry ,I am angry, ope is my friend, tell me if I did not try harder to see him, I loved him,i don’t know what to say now, I only pray that God will send his Holy Spirit to comfort us and have mercy on all of us.

  2. deji said

    i am in solidarity with you my brother. reading this is tough as i can relate with his tending a very dear uncle and understanding how a vibrant boy as he could have gone through such..

    I know there a lot of unanswered questions and queries that leave us uncertain. but it is what it is and it is my prayer you continually find strength. There is a lot of reason to doubt but i pray you see the wisdom and right things that providence has on out paths.

    I regard you and your wife and strength and courage are my offerings for you.

    You have been fabulously helped and favour will not cease from you.

  3. abayomi said

    I respect you sir. Never could think you and your family were going through this ordeal all the while this january when you were talking about buying bible for people.

    All I can do is pray that God will keep you and your family strong in this trying time.

    It is nothing palatable to lose one’s loving child. I know what that feels watching my parents lose children.

    May God keep you strong.

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