Diagnosis: Low Grade Brainstem Glioma 1996
My name is Jeroen, born 1974 on March 25 and I am 24 years
of age now and live in The Netherlands. I will tell some of
the things I experience. I was at school at the time, back in January,
1996,
I think in the USA you would call it the high
school, specializing in data communication. In my off school time, I was
working in a supermarket "Hoogvliet" and
stocking the shelves (a very common thing to do in Holland when you like
to improve your
allowance). My last year requires work experience and therefore I worked
as an intern with a computer selling company.
It was early January 1996 that I, walking to the company, was aware that
I sometimes, during that walk, did made a step to the left
in stead off straight forward. I did not pay much attention
to it because I thought it was due to the cold weather. During
April/March I got Pfeiffer disease and I had to stop all my
activities. But after 8 weeks being at home and partly
in bed I recovered pretty well. During the Pfeiffer disease
I had paralysis in the right side of my face. All the
muscles functions disappeared piece by piece. The GP thought the
paralysis was Bell's Palsy and told me that it would disappear after approximately 4 weeks. Nothing
to worry about! After six weeks it still was not cured and
it became so bad that I had to tape my right eye during
the night because I could not close it anymore. My GP did
send me to the hospital for an examination but nothing was
found. But after making CT- and later on MRI scans they
found a suspicious spot in my brain stem. With a more
special scan with contrast fluid they saw the spot better.
There was definitely something wrong (July 1996).
A biopsy operation with all the risks was proposed; however, after long talks we have decided not to
do so.
What the outcome of the biopsy would be the next step in
treatment should be radiation therapy. During September 1996
we did 28 treatments with a total amount of 56 Gy radiation
and I became very tired and lost weight, ultimately about 10 kilo, down
to 55 kilo.
After the radiation we simply waited. Mid- December 1996 I could with
much
effort, move the edge of my mouth. During the following
months I could move more and more muscles of my face. Things
were going all right for several months and I picked up my
work a little bit; an hour a day but it makes me tired. July, 1997 I was
able to go on holiday to
Canobio, Italy for two weeks.
During August 1997
I became more tired, walking worsened, became more sleepy
and headaches increased. Again
MRI scans, which showed that high intercranial pressure. Hydrocephalus
on the brain.
Normally the fluid in the brain would go down naturally
but that way was blocked by tumor growth. This was resolved by
planting a drain (shunt) in my head with a tube under my skin to my
belly. After the operation all the complains were gone. That
is going all right. During that time the tumor was growing
further and was now also outside my brain stem.
Taking a biopsy was now a option and was done mid-November 1997. It
turned out to be as suspected: a low grade
brain stem glioma. Not malignant but benign cancer cells who
are growing too fast and unbridled. In a short time the same
complaint came back. Again taking MRI scans and there was
hydrocephalus on the brain. On the right side this time.
A
second shunt was placed in January 1998 and through a T
connection connected to the first shunt at the back of my
head. In spite of this treatment I did not recover very
well. Walking remains difficult and I also make more
missteps than before. The doctors did not know what to do
next and the logical treatment seemed to be chemo. I have
first done a PCV treatment but after 12 weeks had to stop
because it did not produce the desired effect. Then 8 weeks of
Temozolomide but that also didn't do the job.
On July 1998
it is two years after diagnosis and I can't walk anymore.
When I try to walk I'll have to hold onto the walls or
furniture at home. When I like to go outside I have gotten a
scoot mobile. That is a kind of electrical chair on three
wheels. For inside I have gotten a regular wheelchair. My
father has made a support on my scoot mobile for his golf
bag, so I can be his personal caddy! I can manage to do the
distance to the golf course and back home with one battery
load. The tires are wide so I have gotten the permission of
the green keeper to enter the fairway but not on the greens.
The strength of my muscles was declining and it became more
and more difficult to hold my head straight up. First we
have purchased a cervical collar and after some adjustments
it gives me more support to overcome the movement of my head
due to the holes and bulges of the street when I am riding
with my scoot mobile. But, because the weakness has also
influenced my right side muscles we have consulted the
doctors again. The last thing they proposed to do is
radiation again. I did not get the maximum amount of
radiation the first time back in September 1996. Therefore I
underwent a new series of radiotherapy in September 1998.
It is a strange experience, you don't see or feel anything.
It is just as if you lie down there for nothing it all.
The treatment has not given the improvement that I had
expected. At first I thought that my condition was improved
by the radiation treatment but as a precaution I was also
started to take 4.5 mg Decadron. But when I was started to
wean off the Decadron I got more complains (headaches and
pain in my neck).
It is now November 1998 now and it seems that
my condition is the same as in July this year. I spend a lot
of time in bed watching TV and video films. In the afternoon
I come out of my bed and try to "work" a little bit with my
computer. Mostly surfing on the Internet and email with
friends and family. I am taking 3 mg Decadron now after
recently increasing this amount from 1.5 mg because of my
complaints.
Final Update: Jeroen passed away on January 22, 1999. Here is a note from Jeroen's father:
Today I have found the strength to tell you, and also the
courage to write down, that our son Jeroen has passed away
on January 22 at 6 pm. The last 8 weeks he had severe pain
and in spite of more morphine he did prefer to endure more
pain in stead of being more asleep and not able to talk with
us. As long as he was lying still and don't turn his head,
not even for a little bit, he did feel great, he always let
us believe. The last day he had difficulties with his
breath. His longs were a little filled with liquid and he
refused to go to the hospital. He would die peacefully at
home and in the present of us and his sister Miralda. At 6
pm he died very peacefully by simply stopping breathing. The
days after were filled with grief and preparations for his
funeral which has taken place January 28. Till that day he
has stayed home. The ceremony of his funeral was very
dignified and crowded with over 200 people. At the
condolences afterwards we could be the proud parents of a
remarkable person and were able to give comfort to much of
his friends. We still are very pleased that we personally
could give him all the care he needed. We have to find a new
purpose in our lives because the last year particularly,
Jeroen was completely in the center of our attention.
In a few days I will send this same massage to the whole
list, so please, if I have made some translation mistakes or
indistinctness please tell me.
Ed van der Erf
Father to Jeroen.
