Part 2
From Birth to Diagnosis
One natural gift that was given to most mothers is natural love
Mother’s natural love! Mothers seem to know best when it comes to their offspring. No one can stand between a mother and her fruit of the womb! They have a natural instinct to know that their baby or child is not well. In fact we should pride ourselves as being the natural doctors. When a child is not well, it is the mother who relates all information about the child to the doctor so that the latter can make a proper diagnosis.
My baby girl was born normal with all the attributes of a healthy bouncy baby. Going through all the normal tests at birth was the natural thing to do. Nothing was wrong with her at birth. Let me mention that when two people who are madly in love get married, they never in their wildest dreams imagine encountering serious health issues on their children. They think all will be well. All they want is to be together forever and will have a healthy family. They may not imagine unforeseen circumstances at this time. They hold so much faith because of their love for each other. My baby girl had a normal life from birth. She could sit at 4 months, crawl at 6 months and walk at 9 months! I breast fed her until she was 9 months as she opted for the bottle instead of breast milk.
She started attending crèche at the age of eighteen months. I noticed the anomaly in her left eye when she was two years old. She enjoyed crèche but initially she resisted it, like most kids. She experienced some bullying initially from her peers until her dad told her to fight back when provoked. She however took to extremes and ended up being known for bullying others. During the early days at crèche we would ask her what they ate for lunch to which she would respond “ tadya eat your food’’ repeating what her teachers were telling them to do. It was in June 1988 when I saw the strange shiny ring in her left eye. I waited for a few days trying to make sure I saw correctly and giving some thought to it. After realizing that it was indeed the case, I decided to take her to our family GP. This family GP had been our family doctor for a while, failed to recognize anything and dismissed it. It really needed careful examination in order to see the problem. The GP was now old and gave him benefit of the doubt.
Back home, being a mother, I continued to observe the anomaly in her left eye. Mothers always lookout for their children and want the best for them. This is a God given gift that no one can take it away from us. Nothing beats a mother’s love. I was only 28 years old and six months pregnant with my second child. I thank God that He gave me the wisdom to pursue this problem and I decided to seek a second opinion.
The second GP was able to identify the problem quite easily and explained to me that it is called Retinoblastoma which is a cancer of the eye. This occurs to children from the age of 2 to 7 years. My husband by now was back from his overseas trip. The GP referred us to a private eye specialist in the Avenues for confirmation and further investigations. The eye specialist also confirmed that it was cancer of the eye called Retinoblastoma. The only cure is to remove the eye! He explained to us that it can be inherited from previous generations.
You can imagine what this did to me and my husband. We were a young couple married only for 3 years! This was devastating NEWS and SHOCKING! So many thoughts came into mind and so many unanswered questions crept in. Questions like “Why us”? “Where is God while all this is happening to us”? “Is God punishing us for our past sins”? We started to research about this disease as much as we could. We did not find much information except that which we were told by the doctors.
I remember after this devastating news, each time we got home, we did not have much words to say to each other. At times tears would drop as we watched our beautiful daughter playing around the house. To imagine that she was going to lose one of her beautiful eyes was just unthinkable. One evening as we sat and looking at each other trying to absorb what had befallen us in our lives, my husband said some words which still ring in my ears. He said, “Carol, whom can you wish to experience what we are going through”? To which I could not point to anyone. No one can wish such a situation on anyone. The situation was upon us. We just had to pull ourselves together and pray that God gives us wisdom, strength and resources to deal with the illness that faced us. We prayed for God’s guidance, strength, wisdom and resources to navigate these turbulent waters.
We asked God to provide resources that we could take care of our daughter with the best possible health and education no matter what would the final outcome of her illness. We had also been told that the cancer could spread to other parts of the body including the other eye. That would result in our daughter becoming totally blind! This was indeed a traumatic experience for us. Because it involved eyes and as you know, one can never have an eye transplant, the private eye specialist had to make sure of the diagnosis. He referred us to government eye specialist at Sekuru Kaguvi eye unit for another opinion. The government specialist by the name of Doctor Young, a Canadian examined our daughter and confirmed our worst fears. Indeed it was the much dreaded Retinoblastoma. Its only treatment, he told us, was by operation to remove the affected eye!
The next 4 weeks saw our daughter going through a series of tests and X-rays to determine the extent of the cancer in the whole body. Some of the tests required hospitalization. With a new baby it meant that I could not go into hospital with her but my mother in law gladly accepted to take my place. She had to have a lumber puncture whilst in hospital. She had a pink cot bed cover which she got as a baby and fell in love with it from the time she could recognize it. Everywhere she went she took it with her especially when it was time to sleep or nap time. She called it “pillow”. This pink blanket gave her some form of comfort and peace. For all her tests she took it along, be it in hospital or X-rays laboratory.
When she had her lumber puncture whilst in hospital with my mother in law, and her “pillow” of course, when the pain became unbearable, she cried calling her baby sister to come and rescue her. In her world, her baby sister was able to rescue her from the pain she was going through.
She had to go through a CT scan of her head at a later stage. Being a toddler, we were advised that she had to be sedated to avoid fidgeting. She was given some medication to make her drowsy. The first dose took time to take effect. We were then told to drive around the block to lull her to sleep. This did not work. Second time around she could not sleep, drove around again and nothing. Third time we succeeded. My late elder sister came to be with us as we went through this exercise and it gave us comfort to have someone so close with us as this was a very trying time for us.
All the necessary tests were completed in about a 4 weeks. The specialists were encouraging us to have her operated on as soon as possible to avoid any further complications.
The Reaction
News soon spread like wildfire among our extended families regards our daughter’s predicament. Mostly were in shock since this was unheard of in our families and wider community e.g. church family. Some called to sympathise. Some came to visit and offer prayers to comfort us.
Others raised sentiments that she was bewitched as nothing like this had never happened. You can imagine what was going through our minds as a young couple. This was a lot to digest and take at the same time. I thank God that as young parents, we remained calm, collected and united as we focused on what we felt we had to do to save our daughter’s life. God gave us strength and wisdom to go through this painful experience as a couple. This also strengthened our marriage as we went through this devastating experience.
I remember one elderly relative tried to discourage us from going through the operation. Being a young mother, I had to put my foot down and told them “If my blood runs through the veins of my daughter, she is going to go through with this operation”. My resolve was so strong cause the doctors kept urging us to get on with the operation to save the other eye. A date was set for the operation in the third week of September 1988.
The Operation
Whilst all the fuss was going on about her operation, our daughter, small as she was at only two and half years old, she also sensed that something was terribly wrong and her parents were in so much distress and worry. Sometimes parents say things in front of their children which we should not say thinking that they are too young to understand. This was not the case with our daughter.
One day just before the operation, I took her to the shops. Whilst driving, I was deep in thought about all the goings on and maybe I was looking sad and down. To my surprise, my daughter just remarked and said “ Mama are you afraid that I am going to die? Don’t worry I am not going to die”. This really broke my heart. It meant that at that age, my daughter understood what we were going through and had the courage to strengthen me. I felt that perhaps God was using her as an angel to encourage us and assure us about what was about to happen. We needed not to fear as God was going to protect her of which He did. This may sound like fiction but this actually happened. Over the years, our daughter’s level of faith has continued to amaze us over the years.
She was admitted in hospital in the 3rd week of September 1988 for the operation. My mother in law had to stand in for me cause of my month old young baby. The operation was not major and went on as planned. She had her “pillow” with her throughout. It was such a painful sight when we went to see her after the operation. Tears dropped as we saw her but were careful not to show our emotions in her presence. This was a heart rending experience which I can never wish on anyone. It had to be done in order to save her life and most importantly the other eye.
Once the wound was healed after about a month, we went to a recommended optician to order an artificial eye. This was the beginning of a series of such visits as we were told that her head is still growing and would outgrow her artificial eye every so often until the head stops growing. Her pre-schooling had to be put on hold temporarily until she had the artificial eye.
From the time she had her operation until the age of about 7yrs, we had to take her for regular checkups. It started as every fortnight, then monthly until it was every three months. This was always a very difficult time especially soon after the operation as to make sure the cancer had not recurred in the other eye. During these visits is when we discovered that there are a lot more cases like ours. Similar cases were also there. Some cases were delayed in being dealt with resulting in eyes being swollen or both eyes being affected. This was a very humbling experience which made us realise we were not alone in this struggle. Now when we see people in town with one eye, we do understand their predicament.
Once we had the artificial eye, the next thing to deal with was to dress and undress the eye every single day! This was a very difficult and painful thing to do every single morning. It would be like a war zone once it was time to do this. She would run away or scream refusing to go through the process. At two years there was no way she could be able to do this alone. The eye had to be cleaned every single day which meant taking it out of the eye socket and replacing it. Eventually with time she got used to the process. It also meant she could not afford to be away from us or go for sleep over parties until such a time she was old enough to do it herself. This was when she was about 5 or 6yrs old.
Life After
Life after the operation became almost normal except the time we had to go for checkups and getting her a bigger artificial eye. She went through normal schools and took part in all school activities such as sports, and extra curriculum activities.
As parents, we still had to watch out for any signs of illness coming back. I remember when she was about 4 or 5, she developed swollen glands on her tonsils. We went into panic mode. We thought this was a recurrence of the cancer. We quickly rushed to our family friend who was a doctor that same day. She examined her and found out that she had a tooth ache which could have caused the swelling. She counseled us and told us not to think of the worst each time she fell sick. This was a huge sigh of relief for us.
Regular checkups continued until she was just over 7years old. The last time we took her, the doctor congratulated us and told us that our daughter may have lost her eye but thank God that her life has been saved.
In Conclusion
The above narration of the trauma that my husband and I experienced cannot be wished on anyone else. It was not through our own doing that the events ended on a positive note, but we both saw the hand of God at play. My daughter has grown to be a young beautiful woman now and went through normal schooling right up to university.
Her eye problem may have brought in trauma to both my husband and myself early in our marriage. But we thank God for seeing us through this experience and as Romans 8:28 says, “And we know that all things work together for good to them that love God, to them who are called according to His purpose”. This narration indeed shows how things worked out for the good to the family. It strengthened our trust in God and made us realise that the children that God blesses us with may experience serious health challenges early on in their lives. May I encourage young mothers out there to make God their only hope and trust.
Psalms 20 :7 tells us that “Some trust in chariots, and some in horses: but we will remember the name of the Lord our God. Let God be your only hope. In 2008 when I went to attend her graduation, she confided in me that she can feel that God is telling her to do something which will influence people around her. When she started the bAw blog some 5 years ago, I remembered her words and perhaps this is what she was talking about.