MISDIAGNOSIS NIGHTMARE.......

"What started with your average headache, turned into a complete and utter nightmare of pain, struggle and misdiagnosis.  It has been described by his family as an emotional roller-coaster ride from hell."

             In March 2012 Malik started to complain about headaches.... As he was a healthy 14 year old boy, no one gave it much thought and it was put down to the over use of video games and a typical case of your parents warning you that this is the result of too much TV.  When his headaches began to get worse and turn to migraines, the red flags went up and his parents knew that he needed to see a doctor. Thus began their biggest nightmare. They were told that he was suffering from nothing more than sinus and hay-fever type problems and were sent home with the appropriate medication.  After a few weeks and no improvement, they returned to the doctor where more tests were done and finally a referral was made. 

      Malik was sent to a local government hospital with suspected meningitis and the nightmare started to go from bad to worse. He was referred to the Children’s Hospital where they were turned away – his family was told that the hospital only treated children up to the age of 13 and the fact that Malik was 14, meant that they could do nothing for him..... By this time he was drifting in and out of consciousness and was unable to walk on his own. His migraines were so severe that he was not able to speak.... To say that his parents were beside themselves with pure and utter fear and stress would be an understatement.  Malik's father rushed him to another local hospital where they were seen to after 30 min and testing was finally underway.

         By now, Malik was barely conscious and was placed under heavy sedation. Everyone was still under the impression that this was the cause of meningitis and doctors continued their tests. After almost 5 days in the hospital, to the complete horror of his parents, he was diagnosed with ‘Clinical Depression’.   Confusion now set in as his parents tried to understand how they had never attempted a lumbar puncture on Malik. This was what they thought  was the normal procedure with suspected meningitis....... but Malik's parents had faith in the doctors and medical staff and trusted that they had his best interests at heart and had truly done everything they could do to find the problem.  He was sent home with nothing more than the basic headache tablets. 

         Later that same night, Malik went into a seizure and his father rushed him to another hospital where the emergency doctors were at a loss for words and could not understand how and why the proper tests were not performed on him. His symptoms that he was presenting were so clearly the cause of something far more severe than 'Clinical Depression'!  Something was drastically wrong with Malik and finally, his parents were assured that everything would be done to find out what was causing this. There was a roller-coaster of emotions; pure relief that something would finally be done but complete fear and dread as to what was causing their little boy all this pain and discomfort and most importantly..... Would he be okay?

         Malik's pain was so severe that even while unconscious, he would scream in agony... calling for his father to help him. Those cries haunt Malik's father night after night and will most likely haunt him for the rest of his life – he was rendered powerless to help his little boy and his heart was broken.   The doctors had managed to stop the seizures and finally Malik regained consciousness but he continued to experience severe pain.  The head neurosurgeon was called in and informed of the series of events and he immediately scheduled a CT scan….. This is when their entire world and everything they knew was thrown into darkness.  

      The scan showed an enlarged growth on his brain situated very close to the spinal cord and nerves along with 2 very large masses of fluid buildup which was causing intense pressure on the brain, thus causing the migraines, seizures and unconsciousness.  Malik's family was told that he had to have the fluid drained right away, if he was to have any chance of making it through the night... his parents were then told that had they not brought him in that night - he would not have made it. What was Malik's family hearing? The words were all too unbelievable and they were so overwhelmed.... their son was officially fighting for his life.

         Malik went into surgery and had a drain installed to release the fluid. After 4 hours in theatre the operation was successful and he was taken into ICU to recover. As soon as Malik woke up, the doctors were totally astounded at how well he had recovered from the lengthy surgery and everyone was so pleased with the outcome. He was no longer in pain and discomfort and the doctors were happy. The worst was not over yet...... Malik's tumor still needed to be removed. Everyone from the head of Neurosurgery to the Professor of the Neuro Facility at University of Western Cape started planning the next procedure, which was going to prove to be somewhat of a challenge. 

                

               The operation was scheduled for the moment that Malik recovered from the first operation. His parents were gripped with fear on so many different levels. Their biggest fear was Malik not pulling through the next operation. Due to the location of the tumour, there was a possibility of paralysis, should anything go wrong. There was also a strong possibility that this was an aggressive form of cancer which had a good chance of spreading.  Many of us worry about our children but I don't think anyone could imagine being in Malik’s parents shoes on the day of the operation. As he went into theatre, his parents tried not think of the worse possible scenario  -  they had never been as scared in their entire lives. All they could do was pray.

         Finally, after another 4+ hours on the operating table, Malik came out of surgery. The doctors greeted the family with the brilliant news that they had managed to remove 95% of the tumour and that as they had anticipated, due to its location, they were not able to remove it all as it would most certainly have caused complications. The tumour was sent for testing and Malik was placed back in the ICU for recovery. 

Being the little fighter Malik is, he astounded the entire medical team when he made another amazingly speedy recovery from the operation. 

        The tests finally came back and Malik's family got the news they were dreading. This was indeed the aggressive form of cancer that they were told about. He was diagnosed with Medulloblastoma which is an  malignant tumour formed from poorly developed cells at a very early stage of life. They develop in a part of the skull called the posterior fossa, but may spread to other parts of the brain. Tumours that affect the central nervous system, are fairly rare and are more common in children They make up about 1 in 5 (20%) of all childhood brain tumours and is more common in boys than girls. 

           No one knows why these tumours form.  Researchers are still trying to find possible causes.....

       After a few more days in ICU, Malik was moved to a ward and was finally discharged after spending a little over a month in the hospital. 

       After a 6 week planning stage, Malik began treatment at Red Cross Children's Hospital, Oncology Unit. The family was placed in the care of the Head of Oncology, Dr Mark Hendriks who then scheduled the radiation and chemotherapy. After a few chemo sessions, the radiation commenced and took place from Monday to Friday for a full 6 weeks. 

            Malik has not been able to go back to school since this all started and it has taken a huge toll on him physically and mentally. Their lives now revolve around Chemo and Radiation, hospitals, doctors, nurses, medication and doctors’ bills….. but throughout it all, Malik has grown immensely and so have his parents. This has been a very long road and there have been more than a few unwanted hospital stays. The chemo had to be intensified in order to make sure the remaining section of tumour would shrink and not spread but it took its toll on Malik and had to be reduced due to the effect it was having. Unfortunately this is all part of the process and the fight he is fighting.

       The doctors are confident that the tumour has shrunk and that it has not spread and an MRI will be scheduled to take place in the next few weeks. Malik will continue to receive chemo until August of this year but a lot of it comes down to how well his little body handles it.  Once the tumour has gone and he has been given the all-clear, only then can everyone begin putting their life back together and Malik can continue being his happy, healthy, normal self again… At the moment, his parents can't even start thinking about the effects that all the chemo is having on him, as long as Malik continues to fight this disease, his parents will continue to do everything they can possibly, do to save their son's life. 

           All they have is faith that Malik will pull through this with flying colours, but no one should have to experience this alone. 

              We can be there as Malik takes on the fight for his life..... Please subscribe to out blog, follow us on Twitter, like our Facebook page and send as many messages of support that we possibly can. 

GO MALIK!! WE ARE ALL BEHIND YOU!

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