The story detailed below is an account written by Grace, a germinoma brain tumor survivor. She is now running her own Founding Hope called WITH Grace.
For a few years I was drinking more than a normal amount of water. I could not be without water all of the time so it led to lots of tests to figure out what was going on. On May 1, 2018, I was diagnosed with a germinoma brain tumor and started chemotherapy and proton radiation.
Having to stop all activities like softball, swimming and gymnastics after I got my PICC line in was really hard. Losing my hair at first was hard but after I shaved my head I felt free! I realize that if all of this was happening to me then hopefully it wouldn’t have to happen to someone else. I am also thankful for what I have been able to do with my story like raising money for other kids fighting and to get closer to a cure. Being able to advocate on behalf of cancer kids has been really therapeutic for me. I was honored to represent this cause in Seattle for Amazon, and in my state capital as well as the nation’s capital and even on the 2019 State of The Union address. Being able to help others is absolutely a triumph.
On July 18, 2018 I “rang the bell” for chemotherapy and on October 1, 2018 I rang the bell for radiation. There wasn’t a bell where I was treated. So I made a poster for my last day of chemo. It is still at the hospital and other kids sign it when they finish treatment.
The ACCO has been there all along the way. From giving me and my family tools to help understand what was happening to helping me become a voice for others fighting the cancer fight. Without ACCO, I would not have realized my full potential to help others. I would not have had all of the once in a lifetime experiences to be a voice for cancer kids without ACCO. They give cancer warriors and their families support and guidance when they need it most. They truly care. They helped also with my dream of a non profit to help continue this journey through the initiative WITH Grace.
I am back in school and sports! I am working hard to help others each day through WITH Grace and to continue to be an advocate so we can someday cure cancer so no one else needs to suffer. I want to go to medical school to be a pediatric neuro-oncologist. I will be able to tell the kids what something will really feel like as I have gone through it already. I still have to go in for check ups every few months but otherwise post treatment I am trying to get back to school and activities and think of new ways to help others through WITH Grace.
What is the one piece of advice you’d give someone on treatment and newly diagnosed?
Stay calm and strong. You are in good hands and you will be okay. It is okay to be sad at times but know that you can find the light and be happy.
Read Grace’s Gold Ribbon Hero story here.
Together, we can make a difference.
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