Fight for our Disy
Donation protected
As many of our friends and family know, my beautiful Mum Dianne (Disy) was diagnosed in June 2015 with Acute Myeloid Leukemia (AML). This is a nasty and aggressive disease and the subtype that my Mum has brings the poorest possible prognosis as it is refractory to standard Leukemia therapies.
Mum's diagnosis came as a huge shock to us all as she has always been so fit and healthy. It has shaken up our worlds and it has been a tough year. For those who don't know, before her diagnosis my mum was a cyclist and rode 50km a day. She also did years of Marathon walking, including the Hawaii Marathon, and did several long distance walks (eg. Port Augusta to Adelaide) raising money for cancer and heart disease foundations/charities.
My Mum simply loves life. She is a positive and amazing person. She takes joy in the smallest, simple things in life. She brings happiness, laughs and smiles to so many people. She is an extremely talented amateur photographer and has won several awards. Her macro photography of plants and insects is incredible. She is a dear and cherished friend to many.
But most of all, my Mum is simply the greatest Mum, Grandma, Wife, Mother in law, Sister, Sister in law and Auntie on the planet and we simply can't bear the thought of life without her. Her only grandchild simply adores her "Grammy".
Last August last year they gave my Mum eight weeks to live. But she fought on through several gruelling treatments, none of which have been successful. As of today however, my mum has been offered a possible lifeline.
Mum has been offered a place on a trial at the Peter MacCallum Cancer Institute in Melbourne, pending all her screening tests are OK. This is a groundbreaking trial of what they call BET Inhibitors. It's the first human trials ever so there have only been 7 people on it so far in Australia.
The drug inhibits a group of proteins which has been shown to regulate how the genes produce the proteins, which inhibits the growth in cancer cells. We are hopeful it will work for Mum, at least to gain a remission or disease control.
To participate in the trial, she will have to relocate from Adelaide to Melbourne for at least 10 weeks. After this she can return to Adelaide but will then need to travel back to Melbourne for follow up every three weeks for up to a year.
I have also been corresponding with the head of stem cell transplant at Peter MacCallum who has advised that if mum gets controlled disease from this trial and develops no other health problems, he will see her for an appointment to discuss the possibility of a stem cell transplant. This is the only real potential cure for her disease, although the procedure itself is extremely risky and would involve Mum spending at least another three months in Melbourne.
So as much as my Mum will hate me doing this, I am asking for help. All costs of the trial and medication are covered. However, Mum is going to need to cover all of her costs of temporary relocation, including accommodation, transport and flights. She has been advised she should have someone with her at all times while on the trial so it is anticipated that there will be many flights backwards and forwards for different family members.
Any help you can offer our family at this toughest time would be so greatly appreciated. If there are funds donated and not needed, we will donate any excess split between The Peter MacCallum Cancer Institute and the Leukemia Foundation.
Thankyou,
Jane
Mum's diagnosis came as a huge shock to us all as she has always been so fit and healthy. It has shaken up our worlds and it has been a tough year. For those who don't know, before her diagnosis my mum was a cyclist and rode 50km a day. She also did years of Marathon walking, including the Hawaii Marathon, and did several long distance walks (eg. Port Augusta to Adelaide) raising money for cancer and heart disease foundations/charities.
My Mum simply loves life. She is a positive and amazing person. She takes joy in the smallest, simple things in life. She brings happiness, laughs and smiles to so many people. She is an extremely talented amateur photographer and has won several awards. Her macro photography of plants and insects is incredible. She is a dear and cherished friend to many.
But most of all, my Mum is simply the greatest Mum, Grandma, Wife, Mother in law, Sister, Sister in law and Auntie on the planet and we simply can't bear the thought of life without her. Her only grandchild simply adores her "Grammy".
Last August last year they gave my Mum eight weeks to live. But she fought on through several gruelling treatments, none of which have been successful. As of today however, my mum has been offered a possible lifeline.
Mum has been offered a place on a trial at the Peter MacCallum Cancer Institute in Melbourne, pending all her screening tests are OK. This is a groundbreaking trial of what they call BET Inhibitors. It's the first human trials ever so there have only been 7 people on it so far in Australia.
The drug inhibits a group of proteins which has been shown to regulate how the genes produce the proteins, which inhibits the growth in cancer cells. We are hopeful it will work for Mum, at least to gain a remission or disease control.
To participate in the trial, she will have to relocate from Adelaide to Melbourne for at least 10 weeks. After this she can return to Adelaide but will then need to travel back to Melbourne for follow up every three weeks for up to a year.
I have also been corresponding with the head of stem cell transplant at Peter MacCallum who has advised that if mum gets controlled disease from this trial and develops no other health problems, he will see her for an appointment to discuss the possibility of a stem cell transplant. This is the only real potential cure for her disease, although the procedure itself is extremely risky and would involve Mum spending at least another three months in Melbourne.
So as much as my Mum will hate me doing this, I am asking for help. All costs of the trial and medication are covered. However, Mum is going to need to cover all of her costs of temporary relocation, including accommodation, transport and flights. She has been advised she should have someone with her at all times while on the trial so it is anticipated that there will be many flights backwards and forwards for different family members.
Any help you can offer our family at this toughest time would be so greatly appreciated. If there are funds donated and not needed, we will donate any excess split between The Peter MacCallum Cancer Institute and the Leukemia Foundation.
Thankyou,
Jane
Organizer
Jane Hill
Organizer
West Lakes Shore SA
