A Garden Escape For My Sick Wife
Donation protected
My wife is many things... she is incredibly strong, inspirational, funny and very giving. But she is also very sick and has been told she only has years to live. I want to share her incredible journey with you, so please do read it all to understand her situation and why I want to organise a garden sanctuary she can escape to...
Talya recently turned 25, and she has been battling a rare and aggressive genetic cancer gene (FAP) that has not only led to a multitude of cancers, tumours and scars, but was also the gene that took the life of her dad aged just 41 and her sister who was 11 months.
While her friends are at the stages of their lives where they are planning their weddings and having families, Talya is planning her funeral and organising her bucket list of things she would love to do before she dies.
She had her entire large bowel (colon) along with half her rectum removed in 2013 when she was 22 due to early signs of bowel cancer. As a result she now lives with an ileostomy, an opening in your tummy that allows for poo to drain into an ostomy bag.
She embraced the new her and her stoma praising that it not only saved her life but it gave her life and freedom again, no longer suffering in agony.
Then in late 2014, a tumour appeared in the area where her large bowel was removed and after PET scans it was advised to monitor the tumour.
By February 2015, the tumour had doubled in size and was blocking her entire left kidney causing a lot of pain and discomfort. Biopsies were done and it was confirmed to be a rare aggressive form of sarcoma called a Desmoid Tumour.
Another new diagnosis was made that week too. After biopsies of her thyroid were done it was confirmed she too had thyroid cancer. Both of these cancers are associated with her rare cancer gene.
She started medication to maintain the desmoid tumour, and was scheduled for surgery to remove her cancerous thyroid in April.
By July the tumour had doubled in size again, and a new desmoid tumour appeared. This new tumour grew out of control and chemotherapy of weekly combinations of methotrexate and vinblastine were started.
By Christmas 2015 the newest tumour was about the size of a rockmelon measuring 15cm and was rather visible to see.
She was hospitalised New Years Eve with high temps and fevers and pain. Her new tumour was turning nectrotic (dying from the middle) because it was growing quicker than the blood supply could grow with it and was making her really sick. The tumour needed to be removed, which meant a trip to Sydney for surgery.
The surgery was a success and the troublesome tumour was removed, however it had grown attached to her small bowel and her stoma, which meant a small bowel resection and a new stoma.
Finally, on march 4th 2016 she was discharged from a lengthy hospital stay. But her new stoma is very problematic.
You see what has happened to the tumour that was blocking her left kidney, it has now grown to the point that it is attached to her entire small bowel, her stomach and sits just under her ribs.
This tumour is what some doctors are describing as being as big as a watermelon.
The tumour is attached to the small bowel that the surgeons tried to surgically create a stoma for her, instead the stoma is retracted and sitting 5cm under the skin and it constantly leaks.
Her surgeons have said there is nothing they can do to fix it, and when asked about removing the tumour from the piece of bowel she was told there was a 90% chance she would bleed out on the operating table.
The beastly tumour that is growing, we have been told will eventually kill her. It might be a year, might be two years, But her doctors aren't positive that she would make it to her 30th birthday (which is only 5 years away).
The tumour can't be removed as it would mean a loss of her kidney, her entire small bowel (keeping in mind she has no large bowel at all) and all of her stomach... this wouldn't allow for her to have much quality of life.
Speaking of quality of life.. because of her constant stoma leaks (some days she can have 10) she is essentially house bound and is rather upset and isolated... she misses her old stoma and the independence and freedom it gave her.
Because she is essentially house bound, I want to organise a beautiful garden, a place where she can go and sit and feel at peace. I imagine for her a Japenese inspired Zen garden with a water feature/pond, some Koi and plants that will provide shelter and privacy.
I want her to have somewhere she can escape to when she is feeling sick from chemo, or feeling down about the 10th leaking stoma bag she has dealt with that day... she can just sit out there, chill, or cry if she needs to.
When she does pass on, I know she wanted to have her ashes scattered at a place that was sacred and special to her, which I imagine would be this garden sanctuary... it can be a place I can even go and sit and remember her and feel her presence... So I guess it will be as much for the both of us as it would be just for her initially.
But as much as I would love to make this sanctuary for her, I really need your help... and even if it is only $1 that you can afford it is $1 more than I had to start this project.
We have been using all our money to build a house (equipped with accessible toilets and showers for her) and paying for Talya's medical bills, and it hasn't left a lot in the budget to create the garden sanctuary, as well as fencing and turf... and I would really love and appreciate your help to create this for her.
It's not the easiest thing in life when you meet your soul mate only to watch her suffer and slowly die. I feel so helpless most of the time, but I feel this is something I can help to make her life peaceful and enjoyable.
If you have read this far, I thank you for reading it. If you choose to donate, know you are helping an amazing young woman.
"There is only one happiness in life: to love and be loved".
Yours Truly,
Russell
A loving husband
Updated Progress:
May 31, 2016
Talya had a CT scan and 2 large blood clots were discovered on her lungs, she started 2 x clexane injections daily.
Scan also revealed a 17cm tumour on her ovary.
June 28, 2016
Talya was told that treatment was not to continue and she entered the care of the local palliative care team. She was told to "do what makes her happy" and to "live and enjoy what time she has".
Oct 2016
Talya had her pain medication increased to 37mcg of fentanyl patches she wears daily which releases fentanyl (like morphine) into her system every hour. She also takes between 2-8 endone a day or more if required.
She was told she might have as little as 6 months-12 months left.
Talya recently turned 25, and she has been battling a rare and aggressive genetic cancer gene (FAP) that has not only led to a multitude of cancers, tumours and scars, but was also the gene that took the life of her dad aged just 41 and her sister who was 11 months.
While her friends are at the stages of their lives where they are planning their weddings and having families, Talya is planning her funeral and organising her bucket list of things she would love to do before she dies.
She had her entire large bowel (colon) along with half her rectum removed in 2013 when she was 22 due to early signs of bowel cancer. As a result she now lives with an ileostomy, an opening in your tummy that allows for poo to drain into an ostomy bag.
She embraced the new her and her stoma praising that it not only saved her life but it gave her life and freedom again, no longer suffering in agony.
Then in late 2014, a tumour appeared in the area where her large bowel was removed and after PET scans it was advised to monitor the tumour.
By February 2015, the tumour had doubled in size and was blocking her entire left kidney causing a lot of pain and discomfort. Biopsies were done and it was confirmed to be a rare aggressive form of sarcoma called a Desmoid Tumour.
Another new diagnosis was made that week too. After biopsies of her thyroid were done it was confirmed she too had thyroid cancer. Both of these cancers are associated with her rare cancer gene.
She started medication to maintain the desmoid tumour, and was scheduled for surgery to remove her cancerous thyroid in April.
By July the tumour had doubled in size again, and a new desmoid tumour appeared. This new tumour grew out of control and chemotherapy of weekly combinations of methotrexate and vinblastine were started.
By Christmas 2015 the newest tumour was about the size of a rockmelon measuring 15cm and was rather visible to see.
She was hospitalised New Years Eve with high temps and fevers and pain. Her new tumour was turning nectrotic (dying from the middle) because it was growing quicker than the blood supply could grow with it and was making her really sick. The tumour needed to be removed, which meant a trip to Sydney for surgery.
The surgery was a success and the troublesome tumour was removed, however it had grown attached to her small bowel and her stoma, which meant a small bowel resection and a new stoma.
Finally, on march 4th 2016 she was discharged from a lengthy hospital stay. But her new stoma is very problematic.
You see what has happened to the tumour that was blocking her left kidney, it has now grown to the point that it is attached to her entire small bowel, her stomach and sits just under her ribs.
This tumour is what some doctors are describing as being as big as a watermelon.
The tumour is attached to the small bowel that the surgeons tried to surgically create a stoma for her, instead the stoma is retracted and sitting 5cm under the skin and it constantly leaks.
Her surgeons have said there is nothing they can do to fix it, and when asked about removing the tumour from the piece of bowel she was told there was a 90% chance she would bleed out on the operating table.
The beastly tumour that is growing, we have been told will eventually kill her. It might be a year, might be two years, But her doctors aren't positive that she would make it to her 30th birthday (which is only 5 years away).
The tumour can't be removed as it would mean a loss of her kidney, her entire small bowel (keeping in mind she has no large bowel at all) and all of her stomach... this wouldn't allow for her to have much quality of life.
Speaking of quality of life.. because of her constant stoma leaks (some days she can have 10) she is essentially house bound and is rather upset and isolated... she misses her old stoma and the independence and freedom it gave her.
Because she is essentially house bound, I want to organise a beautiful garden, a place where she can go and sit and feel at peace. I imagine for her a Japenese inspired Zen garden with a water feature/pond, some Koi and plants that will provide shelter and privacy.
I want her to have somewhere she can escape to when she is feeling sick from chemo, or feeling down about the 10th leaking stoma bag she has dealt with that day... she can just sit out there, chill, or cry if she needs to.
When she does pass on, I know she wanted to have her ashes scattered at a place that was sacred and special to her, which I imagine would be this garden sanctuary... it can be a place I can even go and sit and remember her and feel her presence... So I guess it will be as much for the both of us as it would be just for her initially.
But as much as I would love to make this sanctuary for her, I really need your help... and even if it is only $1 that you can afford it is $1 more than I had to start this project.
We have been using all our money to build a house (equipped with accessible toilets and showers for her) and paying for Talya's medical bills, and it hasn't left a lot in the budget to create the garden sanctuary, as well as fencing and turf... and I would really love and appreciate your help to create this for her.
It's not the easiest thing in life when you meet your soul mate only to watch her suffer and slowly die. I feel so helpless most of the time, but I feel this is something I can help to make her life peaceful and enjoyable.
If you have read this far, I thank you for reading it. If you choose to donate, know you are helping an amazing young woman.
"There is only one happiness in life: to love and be loved".
Yours Truly,
Russell
A loving husband
Updated Progress:
May 31, 2016
Talya had a CT scan and 2 large blood clots were discovered on her lungs, she started 2 x clexane injections daily.
Scan also revealed a 17cm tumour on her ovary.
June 28, 2016
Talya was told that treatment was not to continue and she entered the care of the local palliative care team. She was told to "do what makes her happy" and to "live and enjoy what time she has".
Oct 2016
Talya had her pain medication increased to 37mcg of fentanyl patches she wears daily which releases fentanyl (like morphine) into her system every hour. She also takes between 2-8 endone a day or more if required.
She was told she might have as little as 6 months-12 months left.
Organizer
Russell Goding
Organizer
Sherwood NSW
