Last Thursday, thousands of children wrote the SEA exam. It is incredible how much preparation is usually required leading up to the exam: extra lessons, special prayers for success, discussions of first, second and third choices for schools and the list goes on. The day before the exam parents are busy calming their nervous children and planning what they will do when the exam is over. The buzz was on. But for one boy, the day before the exam was different; he was on the Just Because Foundation (JBF) Ward. Luckily, he got discharged that evening and although it was not to go to write the exam, his parents were still very excited that he was allowed to go home.
We have changed the patient’s name as requested by his mother.
Eleven-year-old Roshie was diagnosed with medulloblastoma—also called primitive neuroectodermal tumour (PNET). It is a tumour that starts in the cerebellum, the lower part of the brain located at the base of the skull, called the posterior fossa. These tumours tend to spread to other parts of the brain and to the spinal cord.
Here is his story as told by his mother.
In 2017, when he entered standard four, Roshie had a vomiting problem. I took him to several doctors who ran tests such as urine and stool, but no one could tell me what was the problem. We then did an ultrasound and the doctors advised me to keep him away from greasy foods. Although that change was made in his diet, he was still vomiting; whether he ate or not, Roshie still vomited.
I carried him to paediatricians in south Trinidad and then to a well-known medical institution where they treated him by putting him on a special diet where he was given only fruits, no rice and no flour - he was still vomiting. My husband and I felt so hopeless. We took him to another doctor who treated him with a heavy dose of gravol. This stopped the vomiting for a month but when that month ended, Roshie then started to complain about his eyes. He described the feeling as something heavy that blocked his eyes and it caused extreme pressure and blurriness. There were no headaches but the vomiting started again.
As concerned parents, we took him to an optometrist who suggested we take him to a specialist. We then headed to the San Fernando General Hospital where a CT Scan was done and that finally game some tangible news. We found out that the vomiting was due to a brain dysfunction and that it was not necessarily a problem with his stomach. Roshie also started to walk as though he was leaning and his smile seemed very crooked. At this point, everyone noticed that something was very wrong.
His teacher knew something was wrong because at school he often complained about body aches and could not write any notes (his friends usually helped by writing them for him). He eventually stopped attending school because he became too weak. Soon after his appearance and personality completely changed. A once active child, stopped going outside to play and he rarely ate because he complained of a choking feeling while swallowing. He was often dazed and unfocused and constantly complaining of a stiff neck.
On March 3, things really began to unravel. We returned to the San Fernando General Hospital where another CT Scan was done. A tumour was discovered. Soon after that Roshie was warded. On Sunday he was seen by an eye specialist and an MRI scan followed. After that, they directed us to the Eric Williams Medical Sciences Complex in Mount Hope where we signed the necessary forms and just like that there was a surgery done on the following Tuesday. All too quickly, we were then given the news that his tumour was cancerous. His protocol was explained to us and the radiation and chemotherapy treatments began.
I really did not expect this. It was very hard and emotional. I have support from our family and I am continuing to pray. We had to make a lot of adjustments. Whatever little we had, we made it work where his diet was concerned.
A lot has changed since Roshie’s diagnosis. He was so brilliant in school, even when he got sick, he shocked me with his end of term results. I expected him to get a D, but he achieved a B+ grade and approximately 88 per cent. Roshie was supposed to write the SEA examination this year and his goal was to go to St Stephen’s College.
We are keeping the faith and continuing to be strong. He is determined so I am not worried. Sometimes life is so hard and you cannot prepare for what it drops on you, instead you have to stay positive and go with the flow. It still blows my mind that as a baby Roshie showed no signs and as he grew older the signs became more prominent.
This journey so far is filled with hope - he is improving one step at a time. The vomiting has stopped, which is a big relief. He is trying, one day at a time. Even the other parents on the JBF Ward comment on how much he has improved. I am only seeing positive things and by the grace of God everything will pull through, one day everything will be okay again. We need to keep courage and continue praying. God is love and he will never give up - he performs miracles.
Roshie is a strong child. I sometimes ask him when he will get better and his response is “Mummy, give me a six months again and I will get back good.” He is the most understanding and mature child you will ever meet. He believes that all of this is God’s decision and if we leave it all up to him, we will never be sad or down.
They who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Isaiah 40:31
Symptoms of medulloblastoma include:
Headaches, which may be worse in the morning and get better during the day.
Nausea/vomiting in the morning.
Problems with motor skills, such as clumsiness or poor handwriting.
Vision problems
Tilting the head to one side.
Walking and balance problems.
(Please note that the symptoms listed may be indicators of other medical conditions which may not be related to cancer. However, if these symptoms exist or persist, please have the child visit a paediatrician as soon as possible.
This is not intended to create fear, panic or paranoia but to serve as information and caution.)