@sophie100 Thank you for this post. I've been reading through many others and have gotten more and more anxious and wondering why I am not angry. Like you, I'm not angry and I don't know why. I also am in "go mode" and choose to remain optimistic. We have not been told there is no hope - so there is hope.

My 23 year old son was diagnosed at Christmas 2025 with soft tissue Ewing Sarcoma -- he has a football sized tumor in his abdomen that is so large they cannot tell what it is attached to and it is disrupting his colon and bladder functions. Therefore, he has a colostomy bag and a superpubic tube to relieve his bladder. We have been told he may have to live with these bags indefinitely as they may need to remove his organs.

He is currently doing the 14 cycles of chemo and they plan to add radiation as soon as he does four cycles. Those cycles have been delayed due to neutripenic fevers and now pneumonia. The worst part is the waiting and not knowing. My son't is on an emotional rollercoaster - for me that is the most difficult part. How to stay emotionally stable and available when his emotions ride highs and lows within hours of each other.

How is your son now Sophie? I see your posts are a year ago. If you are still on this site, I wonder if you are willing to give an update. Thank you for sharing your story.