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!