Medical fund for Rare Melanoma Eye Cancer
Don protégé
Amber & Nick need our love, help, support and prayers to win her battle with rare Melanoma eye Cancer
July 22, 2019 34 year old Amber began experiencing eye pressure and some odd changes in her right eye. Several days later in typical Amber fashion she quiped ‘When I look at you with my right eye only, you look like beetle juice, haha your head looks really small on your body : ( it Kinda does but) Funny but not so much now!
Thanks to a prompt follow up by Amber and Nick, tests that very week revealed unwanting results of a tumor that doctors could not completely explain or treat in Springfield. Unknown heros made quick navigation of the insurance marass for out of network referal to specialists at St. Louis Washington University at Barnes facility the following week. Tests were to be performed in St. Louis July 31 with a highly respected Ocular Onocolgist.
July 31, 2019 we head to St. Louis.
But, wait hold the bus, in perfect Amber form (we were not just going for testing, oh Noah) she had lunch pre planned at Zia’s italian restarant on the Hill (not sure we saw much of a hill ?). With our guts full of protein and positivity in our souls we then proceeded to ravage an italian bakery, prior to the tests!! Amber bought Cannollis and goodies for Nick not thinking of her self… well maybe with the other cakes.. !? (Nick came down for appointment to surprise Amber as his work is important to the family, but he so wanted to be there to support Amber and he was… surprise !).
Extensive and conclusive tests revealed a rare Ocular Melonoma cancer on her retina that was a little larger than 5/8 inch in Dia.. (for reference tumor is on back side of her retina) The tumor goes from the edge of her eye at nose to within 4-5 mm of her optical nerve in the center back of her eye. Due to the size of the tumor it was determined that the best/only path forward for her was Proton radiation therapy that is only available in Boston and San Fransisco. A blessing we believe.
Have to give a heart felt shout out to to Kisha Piggot her Doctor at St. Louis Washington University and her staff because they were fantastic. Straight forward and she could have tried the treatment they do as it was right on the edge of tumor size they can deal with and she made the moral and ethical decision to put this procedure in the correct hands of the proton experts versus enriching her needs and risking the health of Amber. Kudos Kisha
Proton therapy is the optimal solution because the direction they would have gone at St Lou Washington was a radiation infused devise that had to be pre made to perfectly fit her eye shape and size of tumor with a notch for her to be inserted in the back of her eye for five days, then wear a lead pirate patch because of its toxicity. Humm 6 weeks to make it ???
Amber has choosen San Fran and the push is on to solve this correctly and quickly to avoid the spread of this cancer.
The great thing about Proton radiation is that it can be focused for depth and width extremely accurately without damaging the tissue it has to pass through to focus its energy to disrupt the genetics of the cancer and kill it.
It is estimated that only 3360 people in the US will be diagnosed with this rare disease in 2019 and sadly for 370 of those diagnosed it will be fatal. This disease is even rarier for someone of Amber’s age. The general pattern with this type of cancer is (1) It affects people in their 60’s and 70’s-> Farmers or people who have had a lot of exposure to sun with light eyes, blue green. (2) Above 90% chance of survival with the proper care. (3) At the older age they generally take the eye,. (4) It can spread and generally runs from the eye to the liver or other organs.
Big push is on to CT scan her liver and other areas asap back in St. Louis because they want to control test parameters and frankly they have the better expertise, etc..
The great thing about proton radiation is that can be focused for depth and width extremely accurately without damaging the tissue it must pass through in order to focus its energy to disrupt the genetics of the cancer and kill it. The proton beam will be literally pointed directly at her eye with extremely precise placement and the proton beam will pass through the front of her eye and then focus its energy at the back of the eye directly on the cancerous growth.
Amber has chosen San Fran as her destination for this surgery as the push is now on to solve this quickly and correctly to avoid the spread of this cancer to her organs.
Unfortunately, with this rare cancer the first organ it goes after is the liver from the eye. Next big hurdle is to get organs scanned asap for any signs of the cancer spreading.
It is predicted by experts in the field that only 3360 people in the US will be diagnosed with this rare disease in 2019 and sadly for 370 of those diagnosed it will be fatal. So, you can see why the top physicians and treatment facilities in this field are rarer than the disease itself. The specialist in St. Louis has only heard of one other patient of Ambers young age to contract this form of cancer.
The general pattern with this type of cancer is:
1) It affects people generally in the their 60’s to 80’s. Farmers or people how have spent a lot of time in the sun with generally light-colored eyes.
2) Above 90 success rates in eradicating this disease.
3) At the older age they generally take the eye out completely. But not in Ambers case.
4) It can spread and will generally attack the liver first.
Because of the extensive travel and costs associated with this specialized treatment we are respectfully asking for any support that you may be able to provide for Ambers cause.
Support comes in many forms and blessings and prayers are just as important as monetary gifts.
Amber is going to kick this cancer right square in the ass we have no doubt.
She will receive the best care available regardless of where we must go to get it.
July 22, 2019 34 year old Amber began experiencing eye pressure and some odd changes in her right eye. Several days later in typical Amber fashion she quiped ‘When I look at you with my right eye only, you look like beetle juice, haha your head looks really small on your body : ( it Kinda does but) Funny but not so much now!
Thanks to a prompt follow up by Amber and Nick, tests that very week revealed unwanting results of a tumor that doctors could not completely explain or treat in Springfield. Unknown heros made quick navigation of the insurance marass for out of network referal to specialists at St. Louis Washington University at Barnes facility the following week. Tests were to be performed in St. Louis July 31 with a highly respected Ocular Onocolgist.
July 31, 2019 we head to St. Louis.
But, wait hold the bus, in perfect Amber form (we were not just going for testing, oh Noah) she had lunch pre planned at Zia’s italian restarant on the Hill (not sure we saw much of a hill ?). With our guts full of protein and positivity in our souls we then proceeded to ravage an italian bakery, prior to the tests!! Amber bought Cannollis and goodies for Nick not thinking of her self… well maybe with the other cakes.. !? (Nick came down for appointment to surprise Amber as his work is important to the family, but he so wanted to be there to support Amber and he was… surprise !).
Extensive and conclusive tests revealed a rare Ocular Melonoma cancer on her retina that was a little larger than 5/8 inch in Dia.. (for reference tumor is on back side of her retina) The tumor goes from the edge of her eye at nose to within 4-5 mm of her optical nerve in the center back of her eye. Due to the size of the tumor it was determined that the best/only path forward for her was Proton radiation therapy that is only available in Boston and San Fransisco. A blessing we believe.
Have to give a heart felt shout out to to Kisha Piggot her Doctor at St. Louis Washington University and her staff because they were fantastic. Straight forward and she could have tried the treatment they do as it was right on the edge of tumor size they can deal with and she made the moral and ethical decision to put this procedure in the correct hands of the proton experts versus enriching her needs and risking the health of Amber. Kudos Kisha
Proton therapy is the optimal solution because the direction they would have gone at St Lou Washington was a radiation infused devise that had to be pre made to perfectly fit her eye shape and size of tumor with a notch for her to be inserted in the back of her eye for five days, then wear a lead pirate patch because of its toxicity. Humm 6 weeks to make it ???
Amber has choosen San Fran and the push is on to solve this correctly and quickly to avoid the spread of this cancer.
The great thing about Proton radiation is that it can be focused for depth and width extremely accurately without damaging the tissue it has to pass through to focus its energy to disrupt the genetics of the cancer and kill it.
It is estimated that only 3360 people in the US will be diagnosed with this rare disease in 2019 and sadly for 370 of those diagnosed it will be fatal. This disease is even rarier for someone of Amber’s age. The general pattern with this type of cancer is (1) It affects people in their 60’s and 70’s-> Farmers or people who have had a lot of exposure to sun with light eyes, blue green. (2) Above 90% chance of survival with the proper care. (3) At the older age they generally take the eye,. (4) It can spread and generally runs from the eye to the liver or other organs.
Big push is on to CT scan her liver and other areas asap back in St. Louis because they want to control test parameters and frankly they have the better expertise, etc..
The great thing about proton radiation is that can be focused for depth and width extremely accurately without damaging the tissue it must pass through in order to focus its energy to disrupt the genetics of the cancer and kill it. The proton beam will be literally pointed directly at her eye with extremely precise placement and the proton beam will pass through the front of her eye and then focus its energy at the back of the eye directly on the cancerous growth.
Amber has chosen San Fran as her destination for this surgery as the push is now on to solve this quickly and correctly to avoid the spread of this cancer to her organs.
Unfortunately, with this rare cancer the first organ it goes after is the liver from the eye. Next big hurdle is to get organs scanned asap for any signs of the cancer spreading.
It is predicted by experts in the field that only 3360 people in the US will be diagnosed with this rare disease in 2019 and sadly for 370 of those diagnosed it will be fatal. So, you can see why the top physicians and treatment facilities in this field are rarer than the disease itself. The specialist in St. Louis has only heard of one other patient of Ambers young age to contract this form of cancer.
The general pattern with this type of cancer is:
1) It affects people generally in the their 60’s to 80’s. Farmers or people how have spent a lot of time in the sun with generally light-colored eyes.
2) Above 90 success rates in eradicating this disease.
3) At the older age they generally take the eye out completely. But not in Ambers case.
4) It can spread and will generally attack the liver first.
Because of the extensive travel and costs associated with this specialized treatment we are respectfully asking for any support that you may be able to provide for Ambers cause.
Support comes in many forms and blessings and prayers are just as important as monetary gifts.
Amber is going to kick this cancer right square in the ass we have no doubt.
She will receive the best care available regardless of where we must go to get it.
Co-organisateurs (4)
Michael Wisnasky
Organisateur
Springfield, IL
Sheila Mack
Co-organisateur
Amber Bearss
Co-organisateur
Jenna Marie
Co-organisateur