Help Simone Beat Cancer!
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Hey there! I’m Simone, I’m 18, and I’m fighting a rare, incurable brain cancer.
My pediatrician ordered an MRI for me in November of 2017, because I had recurrent migraines. He didn’t expect to find anything since I had no other symptoms. However, the MRI revealed a small mass in my left thalamus. I went back for another MRI, and the mass was still there. By December, doctors were sure it was a tumor. They said that it was an incidental finding. Later, after I switched to online school, I figured out that stress had been causing my migraines.
I had a stereotactic biopsy December 27, 2017. Under a microscope, my tumor looked low-grade. However, when tested using immunochemistry, it was positive for a histone mutation, H3 K27M. That meant that my diagnosis was automatically upgraded from grade II to grade IV, and changed from “diffuse glioma” to “diffuse midline glioma,” which is in the same category as a more well-known, devastating cancer, DIPG. It also meant that the prognosis went from “not great, but not horrible” to “grim.” I immediately started treatment: 6 weeks of chemo and radiation that I finished in March, followed by maintenance chemo in May and June. There has been no growth on my MRIs since March (in fact, in April, we found out that my tumor shrunk!), but I can’t get complacent. This type of cancer is extremely aggressive and can’t be left alone.
Despite that, I’m trying to stay positive. I graduated from Jeffersonville High School in June and still have plans to go to college in the fall of 2019. When I can, I get out to see my friends or go do fun things with my family.
You may be wondering where you come in. Well, I was recently enrolled in a clinical trial at NYU for a new drug, ONC201, which is supposed to help treat tumors like mine. However, it’s expensive to travel to New York, especially without grants. We have been lucky enough to have help from the Alex’s Lemonade Stand Foundation, but we’ve already hit their assistance limit with three trips. The Making Headway Foundation covers the cost of lodging at the Ronald McDonald House, which is a blessing. I also need to eat and get around the city, which is not cheap. While we’re looking into more options, it would be nice to have some money to fall back on in case assistance falls through. So that’s basically it. If you have anything to spare, I’d really appreciate it. <3
TL;DR, I have incurable brain cancer and need money to get to New York for treatment, and also eat/get to doctor’s appointments while I’m there. Anything helps.
My pediatrician ordered an MRI for me in November of 2017, because I had recurrent migraines. He didn’t expect to find anything since I had no other symptoms. However, the MRI revealed a small mass in my left thalamus. I went back for another MRI, and the mass was still there. By December, doctors were sure it was a tumor. They said that it was an incidental finding. Later, after I switched to online school, I figured out that stress had been causing my migraines.
I had a stereotactic biopsy December 27, 2017. Under a microscope, my tumor looked low-grade. However, when tested using immunochemistry, it was positive for a histone mutation, H3 K27M. That meant that my diagnosis was automatically upgraded from grade II to grade IV, and changed from “diffuse glioma” to “diffuse midline glioma,” which is in the same category as a more well-known, devastating cancer, DIPG. It also meant that the prognosis went from “not great, but not horrible” to “grim.” I immediately started treatment: 6 weeks of chemo and radiation that I finished in March, followed by maintenance chemo in May and June. There has been no growth on my MRIs since March (in fact, in April, we found out that my tumor shrunk!), but I can’t get complacent. This type of cancer is extremely aggressive and can’t be left alone.
Despite that, I’m trying to stay positive. I graduated from Jeffersonville High School in June and still have plans to go to college in the fall of 2019. When I can, I get out to see my friends or go do fun things with my family.
You may be wondering where you come in. Well, I was recently enrolled in a clinical trial at NYU for a new drug, ONC201, which is supposed to help treat tumors like mine. However, it’s expensive to travel to New York, especially without grants. We have been lucky enough to have help from the Alex’s Lemonade Stand Foundation, but we’ve already hit their assistance limit with three trips. The Making Headway Foundation covers the cost of lodging at the Ronald McDonald House, which is a blessing. I also need to eat and get around the city, which is not cheap. While we’re looking into more options, it would be nice to have some money to fall back on in case assistance falls through. So that’s basically it. If you have anything to spare, I’d really appreciate it. <3
TL;DR, I have incurable brain cancer and need money to get to New York for treatment, and also eat/get to doctor’s appointments while I’m there. Anything helps.
Organizer
Simone Brady
Organizer
Louisville, KY