"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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Malik's Fight
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kerryknoesen13@gmail.com
We had some real super hero's fighting our corner these past few days and the response that has come from their hard work has been outstanding...
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