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James Crofts Hope Foundation Inc.

your story
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

  Printed with permission
 
  Sent 02/02/2014
  In November 2013 when Lesane was just 5, he was diagnosed with Medulloblastoma. He underwent 2 major brain operations in just 2 weeks to resect the tumour. Unfortunately because of the position on his tumour, the surgeons weren’t able to remove it all and a thin layer was left along his brain stem. He recovered well from the first 8 hour surgery and we were anxious to know how he fared. We were elated to find out that he had made it and devastated only a week later when we were told that the official diagnosis was Medulloblastoma. In addition to this we were told that he needed another operation to remove another part of the tumour that had been missed. The Neurosurgeons were confident they removed as much as they could but the radiographers disagreed so there was to be another 8 hour operation before we were once again relieved to be told that our son had made it through the operation and that all parties were happy with the result.

Lesane spent Christmas recovering in hospital though we made it as special a day as we could for him and our 4 other kids. He started Chemotherapy and Radiation on January 6th just 4 days shy of his 6th birthday. He is now half way through his first round of treatment which is to last a total of 31 sessions over 6 weeks. He has coped incredibly well despite only having one parent with him at a time and only seeing the rest of the family on weekends.

It was hard to witness our happy, healthy, active son become so unwell. And not knowing what to do or who to turn to made things even worse but slowly by slowly we are learning the ropes and finding people and support groups that are helpful. It’s also good that the surgeons, nurses and everyone else at PMH, Princess Margaret Hospital and RMH, Ronald McDonald House have been amazing with both Lesane and our family thus far. We know we have a long road ahead of us but it makes life that little bit easier knowing we are starting to get some good help behind us.

Daniel and Jennie
Australind

 
  Sent 17/10/2013
  Subject: I want to tell you my story
  Our teenage son, Josh, who had been a fit, healthy and sporty boy throughout his life, at the age of 17 started experiencing bad headaches, associated with vomiting. He had also noticed balance issues and often felt nauseous and light headed. We assumed he was getting migraine headaches, but to our horror, a CT scan showed a tumour the size of a golf ball in the fluid of his brain. He was immediately admitted to hospital and he underwent major surgery to remove the lump, and thankfully the surgeon was able to remove the entire mass.

A couple of days later, however, we were told that the pathology test indicated that the lump was in fact a very fast growing form of cancer called a medulloblastoma, normally found in young children. This is something that we were not prepared for and something which changed our lives forever. Over the next seven months, the oncology ward at the Royal Hobart Hospital became a second home to us. Josh went through six weeks of intensive radiation treatment directly administered to his head and spine. After that he underwent four months of high dose chemotherapy, along with stem cell reinfusions which were given through a Hickman’s Line inserted into his chest. He went through so much, our darling boy, and he has been so brave throughout the whole ordeal.

We are happy to say that all his MRIs to this point show no signs of cancer and all the medical team are happy with his progress. It has only been 9 months since his main treatment ended, but he bravely went back to college this year on a part-time basis and he is doing very well. He recently got his learner’s licence and his ambition now is to be a paediatric nurse. His life will never be the same, nor will his family’s and loved ones, but we are all just so thankful to God that he is still with us and his prognosis is very good.

Carol and Leigh – Hobart TAS
 
  Sent 11 May 2011
  Subject: I want to tell you my story
 

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

 

 
  Sent: 08/03.2010
  Subject: For your story section
 
  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
 
 
  Sent: Wednesday, August 19, 2009 11:22 AM
  Subject : My Story - Dad with GBM
   
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
 

 

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