In the beginning, surviving seemed like the ultimate goal. Now, over 2.5 years post transplant, I struggle to see survival as a victory. Since my transplant, I have suffered acute and chronic graft-versus-host disease (GVHD) in my gut, skin, eyes, liver, and mouth. I have also suffered complications ranging from acute kidney injury necessitating dialysis to a tacrolimus-induced grand mal seizure to permanent alopecia.
Our kids, including me, deserve more than surviving. We deserve to thrive. The research isn't there yet - we still don't understand the mechanisms behind GVHD. My goal is to establish a Hero Fund dedicated toward young adult survivorship and chronic GVHD. To start this fund, I need to raise $10,000. You can help by donating here. You can also redirect any funds you have raised in the past year (including from head shaving) to this fund by contacting me directly.
My St. Baldrick's Honored Kid profile: https://www.stbaldricks.org/kids/mypage/7735
An article I wrote last June for St. Baldrick's: https://www.stbaldricks.org/blog/post/a-survivor-speaks-dont-find-my-silver-linings-for-me
For more on my experience with AML, BMT, GVHD, and young adult survivorship, see my blog at AMLetc.com.