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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: | |||
| Printed with permission | |||
| Sent 11 May 2011 | |||
| Subject: I want to tell you my story | |||
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To the James Crofts Hope Foundation
My six year old son Eric had balancing problems and couldn’t hear well in one ear for over a year. Last year in October 2010 his co-ordination seemed to worsen and then he would vomit after waking up each morning. Took him to my G.P. and she suggested an MRI scan. I booked Eric in for an MRI that week 8th of October 2010 and on that day was told that he had a large brain tumour. News that I never expected to receive, there was no time to prepare or plan or even digest this information. Eric was sent straight to the emergency at the Royal Children’s Hospital (RCH) in Melbourne and underwent a 10hr operation on the 9th of October 2010 to remove the tumour from the back of his head. Not all of the tumour was able to be excised and I finally had an answer to why he was so clumsy! Eric had a slow growing benign tumour called pilocytic astrocytoma (posterior fossa). Brain tumours in children are different to adults I have been told. It’s been seven months since his surgery and he has lost complete hearing in one ear, dry eye condition and some weakness in the right side of his body. He has regular check-ups at the RCH. His tumour is monitored with MRI scans which he will need for the next 10 years just to make sure that it doesn’t regrow and that is what worries me the most. He started prep this year and he is an amazing child and talks about his tumour with such grace. A big thanks to the doctors and all staff who see him on a regular basis at the RCH they do an incredible job and save lives!
Lina Fantini
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| Sent: 08/03.2010 | |||
| Subject: For your story section | |||
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Dear James Croft Foundation, After 22 brave months, my dad finally lost his long hard fight with his gbm end Jan this year 2010. I prayed and wished so hard this day would never come, I had hoped with all my heart that we would be one of the few lucky ones and he would be able to beat this horrible, aggressive disease, I imagined that this was all a bad nightmare and I would wake up soon to a healthy dad... my complete family. But the reality is: life is crazy sometimes and I know my life will never be the same again. I love you Dad and you will forever be in my heart. On behalf of my myself, my dad and my family I would like to specially thank the James Croft Foundation for giving their support when so many other organisations wouldn't or couldn't. The support you gave us was exactly what we needed at the time and we are forever grateful. Thankyou for doing the work that you do, being kind and showing compassion to all the people you help! You are doing beautiful, meaningful and soulful work. Best wishes always Cassandra |
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| Sent: Wednesday, August 19, 2009 11:22 AM | |||
| Subject : My Story - Dad with GBM | |||
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My 57 yr old Dad was diagnosed 17months ago
with glioblastoma multiforme - the worst type of brain cancer you can
get. He was given 2years max to live and stripped of nearly all hope.
He was diagnosed 1 week after the long
awaited birth of his first grandchild. Intense Joy turned to complete
disbelief and shock. Worlds turned upside down and inside out.
The last year and a half has been an intense
emotional journey of love, pain, sadness and struggle, but still my
brave Dad fights on.
After radiotherapy, major brain surgery and
chemotherapy, the tumor in his left temporal lobe returned within
7months.
More chemotherapy and another major brain
surgery and the dreaded aggressive tumor grew back after only 3weeks!
Shocked, scared and still recovering from
his second surgery he was scheduled in, and endured his third major
brain surgery within 1year.
Its been 4months since his 3rd operation and
had been doing fairly well after having treatments of Avastin.....
though the cost is killing us.
Last night he was taken to emergency with
swelling. Round 4..... how much more can his body take? The human body
never ceases to amaze me.
This cancer is debilitating, aggressive and
shows no mercy, but still he fights on with an enormous amount of inner
strength that makes me so proud. Always trying to be strong and protect
his family from his pain.
Through tears and heartache I watch his
daily struggle and hope with all my heart for a medical breakthrough or
a miracle of some sort before its too late.....wondering how long we
have, what will come next, but putting on a brave face like I see he
does, in the shadow of his his pain and confusion.
I see his physical pain. His bodies
weakness, his minds confusion, his inability to speak feelings, his
independence and dignity fading a little each day. I feel his sadness
and regrets and wish I could heal his mind as much as his body..... but
all I can do is be there for him, spend time, talk, research and
advocate...try and understand the jawful ourey he is experiencing.
This is a hard road and so much of the time
I just want it to be over, but over means death, and then thats a whole
different journey.... just as hard or harder than this one. I try and
remember how many other people in the world are going through similar
journeys. It helps to know you are not alone.... though I would never
wish this dreaded disease on anyone.
My Dads cancer has not come without
gifts.... though sometimes they are hard to see in the immensity of it
all. It has taught me alot about my dad, my family and the importance of
appreciating every day you have with your loved ones. It has also given
way to an enormous and beautiful influx of caring and kindness from
friends, family, health professionals and strangers.
As hard as it has been, It has opened my
eyes to a wonderful sense of faith and goodness in this crazy world we
live in.
Married over 30yrs, mum has shown the most
tremendous amount of inner strength she never knew she had. Giving up
work to care for my Dad 24/7, she is a selfless and amazing woman who
despite being terrified of a future without him has carried on through
each day, diagnosis, symptom, emergency visit, personality change,
emotion, frustration and doctor appoinment with determination and hope.
My Dad has struggled through many hard roads
in his life so is really good at being tough and brave. Even though he
is obviously scared and suffering he tells us he is 'fine' and calmly
takes each operation, chemo treatment and deficit in his stride. I love
him so much, my heart is breaking.... I wake up each day, fingers
crossed and hopeful for the future. Hope is what gets us all through.
For all those out there who are on, or
have fought through this journey or something similar, my heart goes out
to you. Show your love, say what you need to say and enjoy every
precious moment. Try and let happiness touch your lives in every moment
you can..... and remember you always have hope.
Cassandra x
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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 2007I 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. 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 AMI 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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