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How do you, as a parent, deal with the anger? Son has sarcoma

Posted by bkayk @bkayk, Feb 19, 2024

My son was diagnosed with Ewing Sarcoma February of 2022 when he was 17. Had chemotherapy and surgery. Was doing great working out playing on college basketball team. Then December of 2022 he had a recurrence. Now doing proton radiation and oral chemotherapy.
I am just do angry! It’s not fair!

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Colleen Young, Connect Director | @colleenyoung | Mar 13 8:07pm
In reply to @ebloom64 "@sophie100 Thank you for this post. I've been reading through many others and have gotten more..." + (show)
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@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.

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@ebloom64, as a mom it is so hard to see our children suffer. I know he is a young adult. But he's still your baby. Reading your story, here are a few things:

You might also wish to follow the
- Ostomy & J-Pouch Support Group https://connect.mayoclinic.org/group/ostomy/

Your son may wish to join the monthly Zoom group to meet other young adults dealing with cancer.
Open to all patients (not only Mayo patients), the AYA support group facilitates various activities to talk about the hard stuff but also have fun and build a community of people who “get it.” Sessions are 6 to 8 p.m. (Arizona time)on the first Thursday of every month and alternate between in-person and virtual.
To register and get the Zoom invite, email Melody Griffith griffith.melody@mayo.edu

How is chemo going? Is the pneumonia under control?

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