Stein Stoess Brain Tumor GBM IV Fund

 
Raised: $4,080.00
Goal: $100,000.00
 
 
 

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Stein Stoess

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Please donate to fund Stein Stoess' cancer bills and general expenses. Insurance helps but there are still a lot of bills to pay. Stein was diagnosed with Glioblastoma Multeforme IV Octo... more

 
 
 
 
 
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Updated posted by Stein Stoess 9 days ago

6 months ago... they gave you 6 months! Today we proved them wrong! I love you in more ways than anyone could possibly imagine! You are a fighter, you are a magician, you are captivating, you are the one that said to them you had more to live for and today you have proved them wrong! I am so proud of you for fighting and showing them that a "terminal" diagnosis is not in your stars! Keep being beautiful, amazing, loving and triumphant!!!! I plan on sitting and rocking in those old wooden chairs until we are so old we can't even remember what our great great grandchildrens' names are... I love you. xoxo Allison

 
 
 

Updated posted by Stein Stoess 27 days ago

Hello Everyone!
Thank you so much from the bottom of my heart for those of you have supported us and continue to support us through this difficult time. I am finally updating. It has been hard to put my thoughts, feelings and heart out after finding out that the love of my life Stein has been diagnosed with a "terminal" illness. I put terminal in quotes because I refuse to believe that his diagnosis will end his life and ours after it has just begun. We got married June 1st 2013. It was the most wonderful and soul fullfilling moment of my life aside from giving birth to my beautiful sons Gray and Harrison. I not only found my soul mate but I also gained another unbelieveably amazing son, Ethan. Wow! We have a grand family! Love love love.
We were ready to embark on the next chapter with many to come in the book of our lives god willing. Then came the test. In October 2013, just 4 months after our beautiful wedding Stein had a seizure and I rushed him to the emergency room at Baptist. They did a catscan and found the mass, with an mri, surgical biopsy, they diagnosed him with an aggressive brain tumor called Glioblastoma aka GBM Multiforme IV. The tumor was the size of an "extra large egg" in the left frontal lobe of his brain. WHAT? "This is all wrong" I thought to myself. He is amazing, he is a genius, he is a mensa member, a musician, a songwriter, a poet, a philosopher, a politician, he is a rainbow of imagination... He is the most magnificent person I have ever known. The man I had always dreamed of living with the rest of my life. Growing old, gray and porch sitt'in til the end of our days. There is no way that an "egg" of a tumor can cause this much destruction in Stein's life. So, life as we were expecting and knew at that moment turned upside down. I went on FMLA, (no pay from work but they couldn't give my job away) to stay home and take care of Stein as he started his rigourus six weeks of radiation and chemo treatment and both of us battling our emotions. Two months after, in January we did another MRI, the tumor did not shrink but did not look healthy (which is a good thing) but, there is always a "but"... Stein always says using "but" cancels out everything you just said. He is right (did I just say "he is right"?). The "but" happened to be an inclusion they found on his MRI, so we had to do another MRI which they called a perfusion. Came back positive for New Growth/Recurrence. ?????????????? That conclusion ruled him out for a clinical trial that he was initially eligible for and we were eagerly waiting to start, hence he started the standard of care treatment. At this point the tumor is still inoperable.
Standard of care means just Chemo, we are on our 4th treatment and have to wait for another MRI and hope that it shrinks the tumor. UGH. REALLY? My husband is as healthy as a horse aside from the steroids, anit seizure drugs administered and that darn Tumor which keeps him from doing almost anything too physical. Standard of care is good, our brain cancer team is loving, caring and open but "Standard of Care", sounds more like the status quo!. We are not giving in to status! So, at this point we are looking beyond "status quo". Who can save our Life, who is going to save Stein's life??? Who can save everyone who is going through the same things that we are feeling, seeing, living... I have found that as rare as this is there are so many couples dealing with this type of disease.
I am finally back to work at the same branch, part time in a position that is not the same, a pay cut in half that barely pays my "benefits", but thankful that I am able to still participate and be a part of a great team of supportive co-workers. Stein subscribed to LTD from which he paid into insurance from his previous employment that is small but helps pay some of our monthly bills. On the flip side and of course Murphy's Law commends, between mounting medical bills that are staggering and our 114 year old house that is finally feeling the century and days it has birthed, everything is starting to mound. I have always been the one to try to be there for people and friends in need especially financially never thinking I would be the one to someday ask for help. Now, swallowing my pride, I am asking for help. I need help paying bills, medical and home repair. The things Stein had planned on restoring and fixing in our home are in lieu because of his physical restrictions. Our roof is leaking, my back room, bathroom and hallway floor is damaged, we have a tree that broke in the ice storm that is lingering over our little shed. The only thing that remind of renewal and spring are the little jonquils that have started to peep in our backyard of muck in the midst of all of this craziness.
Stein had started workin on his last album a couple of years ago, Zenith, with production halted in various ways but we are hoping to release soon to help pay for some of our incoming bills and hopefully a second album to follow of new music. (Sigh) We are just looking for support and more prayer and anyone who can help spread the word via Media Outlets, Web, word of mouth to raise funds. We don't want to worry about shutting our front door because it is only on one henge, we don't want to worry if mold is growing in our house because of the damage to our roof and floors. we don't want to worry about our back room caving in because of the roof. We don't want to worry about the tree and its branches caving in our shed.... EEEEEeeek! So, beside the medical bills, we just want to feel like everything we planned on being ok.... is ok. So, this is my plea, my rant, whatever you call it.... I am asking for help in many various ways. I know its alot, its a whole lotta living that we are wanting to do but we need assistance. Thank you and god bless all of you who have contributed in trying to help us succeed! If you can spread the word maybe miracles can happen. (I believe in Miracles! The cheeseball that I can be keeps singing that old Ramones song in my head! Its pretty bouncy and positive).
My Stein is an amazing person, someone who has more to give than a "tumor" wants to allow him to give. I want everyone to know who he is and what he means to me and to this world. With love I am typing almost uncontrobllably to let people know because I want him to live and I want him to know that there is more love and support and people who feel the same way I do. xoxo Allison-Thank you!!!!

 
 
 

Updated posted by Stein Stoess 27 days ago

Hello Everyone!
Thank you so much from the bottom of my heart for those of you have supported us and continue to support us through this difficult time. I am finally updating. It has been hard to put my thoughts, feelings and heart out after finding out that the love of my life Stein has been diagnosed with a "terminal" illness. I put terminal in quotes because I refuse to believe that his diagnosis will end his life and ours after it has just begun. We got married June 1st 2013. It was the most wonderful and soul fullfilling moment of my life aside from giving birth to my beautiful sons Gray and Harrison. I not only found my soul mate but I also gained another unbelieveably amazing son, Ethan. Wow! We have a grand family! Love love love.
We were ready to embark on the next chapter with many to come in the book of our lives god willing. Then came the test. In October 2013, just 4 months after our beautiful wedding Stein had a seizure and I rushed him to the emergency room at Baptist. They did a catscan and found the mass, with an mri, surgical biopsy, they diagnosed him with an aggressive brain tumor called Glioblastoma aka GBM Multiforme IV. The tumor was the size of an "extra large egg" in the left frontal lobe of his brain. WHAT? "This is all wrong" I thought to myself. He is amazing, he is a genius, he is a mensa member, a musician, a songwriter, a poet, a philosopher, a politician, he is a rainbow of imagination... He is the most magnificent person I have ever known. The man I had always dreamed of living with the rest of my life. Growing old, gray and porch sitt'in til the end of our days. There is no way that an "egg" of a tumor can cause this much destruction in Stein's life. So, life as we were expecting and knew at that moment turned upside down. I went on FMLA, (no pay from work but they couldn't give my job away) to stay home and take care of Stein as he started his rigourus six weeks of radiation and chemo treatment and both of us battling our emotions. Two months after, in January we did another MRI, the tumor did not shrink but did not look healthy (which is a good thing) but, there is always a "but"... Stein always says using "but" cancels out everything you just said. He is right (did I just say "he is right"?). The "but" happened to be an inclusion they found on his MRI, so we had to do another MRI which they called a perfusion. Came back positive for New Growth/Recurrence. ?????????????? That conclusion ruled him out for a clinical trial that he was initially eligible for and we were eagerly waiting to start, hence he started the standard of care treatment. At this point the tumor is still inoperable.
Standard of care means just Chemo, we are on our 4th treatment and have to wait for another MRI and hope that it shrinks the tumor. UGH. REALLY? My husband is as healthy as a horse aside from the steroids, anit seizure drugs administered and that darn Tumor which keeps him from doing almost anything too physical. Standard of care is good, our brain cancer team is loving, caring and open but "Standard of Care", sounds more like the status quo!. We are not giving in to status! So, at this point we are looking beyond "status quo". Who can save our Life, who is going to save Stein's life??? Who can save everyone who is going through the same things that we are feeling, seeing, living... I have found that as rare as this is there are so many couples dealing with this type of disease.
I am finally back to work at the same branch, part time in a position that is not the same, a pay cut in half that barely pays my "benefits", but thankful that I am able to still participate and be a part of a great team of supportive co-workers. Stein subscribed to LTD from which he paid into insurance from his previous employment that is small but helps pay some of our monthly bills. On the flip side and of course Murphy's Law commends, between mounting medical bills that are staggering and our 114 year old house that is finally feeling the century and days it has birthed, everything is starting to mound. I have always been the one to try to be there for people and friends in need especially financially never thinking I would be the one to someday ask for help. Now, swallowing my pride, I am asking for help. I need help paying bills, medical and home repair. The things Stein had planned on restoring and fixing in our home are in lieu because of his physical restrictions. Our roof is leaking, my back room, bathroom and hallway floor is damaged, we have a tree that broke in the ice storm that is lingering over our little shed. The only thing that remind of renewal and spring are the little jonquils that have started to peep in our backyard of muck in the midst of all of this craziness.
Stein had started workin on his last album a couple of years ago, Zenith, with production halted in various ways but we are hoping to release soon to help pay for some of our incoming bills and hopefully a second album to follow of new music. (Sigh) We are just looking for support and more prayer and anyone who can help spread the word via Media Outlets, Web, word of mouth to raise funds. We don't want to worry about shutting our front door because it is only on one henge, we don't want to worry if mold is growing in our house because of the damage to our roof and floors. we don't want to worry about our back room caving in because of the roof. We don't want to worry about the tree and its branches caving in our shed.... EEEEEeeek! So, beside the medical bills, we just want to feel like everything we planned on being ok.... is ok. So, this is my plea, my rant, whatever you call it.... I am asking for help in many various ways. I know its alot, its a whole lotta living that we are wanting to do but we need assistance. Thank you and god bless all of you who have contributed in trying to help us succeed! If you can spread the word maybe miracles can happen. (I believe in Miracles! The cheeseball that I can be keeps singing that old Ramones song in my head! Its pretty bouncy and positive).
My Stein is an amazing person, someone who has more to give than a "tumor" wants to allow him to give. I want everyone to know who he is and what he means to me and to this world. With love I am typing almost uncontrobllably to let people know because I want him to live and I want him to know that there is more love and support and people who feel the same way I do. xoxo Allison-Thank you!!!!

 
 
 
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Created by Stein Stoess on December 11, 2013

Please donate to fund Stein Stoess' cancer bills and general expenses. Insurance helps but there are still a lot of bills to pay. Stein was diagnosed with Glioblastoma Multeforme IV October 2013, a very aggressive form of brain cancer. Hate to ask, but can you donate? Anything is great and very much appreciated! We are staying positive and are so very grateful to have the support of family, friends and those who we do not even know that have extended their love and prayers to help us walk this road. Thank you so much!!!


Stein & Allison


Link to join Stein's Facebook Support Page for updates on his fight against brain cancer.
https://www.facebook.com/ImOnYourTeam

Here are some links to learn more about Glioblastoma Multeforme and Brain Tumors.
http://www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html
http://www.abta.org/
http://www.braintumor.org/
 
 
 
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Keep the gloves up! The fight ain't over unless you quit and you are no quitter! Love you and I'm always only a phone call away :)

posted by Ginger Brunecz 4 months ago

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