The side effects of treatment were awful. All I can really say is it was a lost 8 months and it took me a good year after that to start feeling “somewhat” physically normal. I went and still go to neurofeedback to try to help with some of the emotional scars resulting from this experience.
The whole treatment experience was hellish. I didn’t and still don’t know if I’ll be around to watch my son and daughter grow up. I worry that if I’m gone too soon, my daughter may not remember me when she’s older.
That being said, my experience with Ewing’s has been one of the positive ones. It pales in comparison to what others have gone through and are still enduring. Ewing’s Sarcoma usually strikes children or young adults. That makes me older than most Ewing’s patients who never have the chance to experience life or are just getting started.
Today, every four months, I go with my father for some type of scan. Sometimes it’s a chest/pelvic CT scan, sometimes a bone scan. Other times it’s a full body PET scan.
When scan time comes around it’s sheer terror and my father and I do the best we can to bear the experience. I know too well that I have just a 10% chance of survival should the news be poor.
Has there been some positive that has come out of this experience?
Sure! I’m closer to God. I appreciate my family and real friends like never before. I don’t let the small insignificant stuff occupy my mind.
Would I wish this on my worst enemy? No.
Has this experience brought me too my knees? Yes.
Have I seen and heard the devastation caused by a child/young adult’s painful death? Yes, far too often.