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your story
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If you
have a personal experience in dealing with brain tumours and brain cancers
and feel that it would help you or others to share it:
please tell
us
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Printed with permission
Sent: Wednesday, December 19, 2007 11:44 AM
Subject: RE: I want to tell you my story
Since my last email to you so much has happened.
On the 11 June Dr Charles Teo operated on my father
to remove his tumour. Since the operation my dad has had 3 MRI’s and all
have shown that no tumour is appearing which is fantastic. His speech
had come back a few weeks later from coming home in April but after the
operation it went again. Dr Teo said that it will come back and after
6months his speech is nearly 100%.
Dad is still paralysed on his right side and Dr
Teo explained this was due to the radiotherapy damaging his good cells
trying to destroy the tumour, however Dr Teo said if he was not
paralysed he would have been after the operation as the tumour is in the
motor region. He has some feeling in his right leg but his right arm has
nearly no feeling. What is also great is his Oncologist in Perth has
referred him to the Brain Injury department and dad has started physio
twice a week, they are trying to get him to walk again. He has so much
determination I know he will.
Since June we have had my dad’s 55th
birthday in which we bought him a little Staffy puppy and this year will
have the best Christmas ever as a whole family.
I hope you are well Helen, have a very Merry
Christmas and a safe New Year.
Kind regards
Laura Agnello
Sent:
Monday 30th April 2007
I would like to tell you about my father. My father was diagnosed in
April 2003 with a Glioblastoma brain tumour, stage 4 – the worst kind you
can have.
My father underwent surgery that month to remove what they could of the
tumour. He was told he had 6 months to live. My dad is the strongest person
I know yesterday was 4 years to the day of his operation.
His treatment has involved Temozolomide (chemotherapy) and conformal therapy
in June 2003 a second course of Temozolomide as the tumour progressed in
April 2005. He had a further recurrence and given stereotactic radiosurgery
in May 2006 with further progression in February 2007 and again received
stereotactic radiosurgery & Temozolomide treatment in February 2007.
The treatment unfortunately has stopped working due to the aggressiveness of
the tumour, 3 weeks ago he received carboplatin chemotherapy which
unfortunately has not worked either, my dad has lost function to his right
arm and leg and now cannot talk. He is in Sir Charles Gairdner Hospital and
is coming home tomorrow to be comfortable and so we can spend time with him
in his own environment.
My dad has been called the “Miracle Man” the doctors have not had anyone
that has lived so long being diagnosed with the tumour my dad has got. He is
a true inspiration, it’s just so unfair. God must need him more than we
do……..
Laura Agnello
Greenwood – Western Australia
Sent: Sunday, October 01, 2006
My family and
i moved from New Zealand on 14/12/05 and i was seven months pregnant. I had
a cute little boy on 25/02/06, we named him Bobby. There was something
special about Bobby. He was born in a sac. My whole world came crashing down
8 weeks ago when Bobby got rushed to Royal Brisbane Childrens hospital after
a cat scan showed alot of fluid on the brain but also a lump in the middle
of his brain. He had surgery a couple of days later to take a biopsy of the
lump and to relieve the pressure from the fluid. It was a long and harrowing
wait for the results of this biopsy. The results - a brain tumour called "A
Typical Rhabdoid Tumour (AT/RT)". He only had 3 weeks to live. He
deteriorated very fast. Feeding through a tube, taking morphine to ease some
of the pain, these are only a few. Bobby passed away at the age of 7 months
old on 28/09/06. My world feels empty without my little boy. I want him to
come back to me so i can hold him again. Nothing like this has ever happened
in our families so this shocked everyone. I cannot wait to see my son, he
was my life, my world, my everything!
Jamie Tawa
and Martin Hill
Sent: Tuesday, December 02, 2003
10:32 AM
I am a 36 yr old Australian male who was diagnosed with a an
Oligodendroglioma in the left frontal lobe on 01.01.2000. "Happy New
Year"
I started sleepwalking in 1990 and from 1990 - 2000 I suffered from
massive headaches, nausea, memory loss, severe behavioural swings and these
symptoms would kick in and out at their leisure.
My main problem was that no-one believed I was sick and that I was just
lazy and was an idiot. So much so I believed it and in 1995 I
attempted suicide by gassing myself in the car. Obviously it didn't
work, thank God.
Don't let anyone tell you are not ill when you know you are. Get a
CT or MRI as soon as possible. Don't let "It can't happen to
me" stop you.
I was in the military and have a very detailed medical record of these
events and would be happy to share any of my knowledge with others. I
have had surgery and am still on the road to recovery.
Bevan Taylor
Howlong NSW
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