Ewing's Sarcoma: Where are you in your journey?

I’m Sarah, daughter is Maddie is 15 and she was diagnosed with Ewing Sarcoma in December 2018. We are currently going through intense chemotherapy every 2-3 weeks. In the next week or so she will start 6 weeks of radiation on her right shoulder, where the biggest tumor is. She’s currently not attending school. Days in between chemo are mostly filled with blood transfusions, platlet transfusions, fevers, neutropenia, but she does manage to usually have a few good days where she is feeling well and can be as normal of a teenager as possible. We anticipate her treatment to last into late summer/early fall.

I love the name: @madstrong!! I can't imagine it being my child, it was rough on me as an adult. I will keep you and your daughter in my prayers. One day at a time, one treatment at a time. Make a list of the things she wants to do when she gets through treatments. Those types of things were huge for me while i was going through rough times.

@madstrong you can PM me any time- just to vent, for advice, or whatever. I'll try to respond within a day or two. You or your daughter.

Hi @madstrong and @kristennursepatient, I wanted to check in to see how you are doing. Sarah, I'm sure you have your hands full. How is radiation going for your daughter? How are you?

Thanks @colleenyoung ! I've been doing ok. I'm back to work full time, but need to be better about my exercises to restrengthen. No evidence of disease on last scans, so planning for the future!

Hi @madstrong can you please provide an update on your situation? How is your daughters health? How have the treatments been working? A family member of mine (16 years old) has been diagnosed with Ewing Sarcoma, with the tumor growth occurring on her fibula.

Can someone please offer some advice to my cousin. She is 16, and has been diagnosed with Ewing’s sarcoma, originating in the fibula. She begins chemo today. I would really appreciate hearing some input from someone who has been in this position.

@mgashaj, I can imagine that you are anxious for your cousin. I'm bringing @madstrong and @kristennursepatient into this discussion so they can share first hand experiences with you.

How did chemo go today for your cousin? Do you know what type of chemo drugs she is getting?

I actually already messaged @madstrong, I’m hoping to get a response as I can see she’s been in a very similar situation.

Hello. I'm sorry that your cousin has to go through this. She's young and strong, she can beat this thing! Chemo was draining from the moment in ran in my veins. Extra rest, hard candies to suck on for the iphosphomide/etopiside, Lots of visitors-even when she says she's fine, a hobby that doesn't take much energy for the low days, I'm happy to answer any questions you may have. Stock up on hats and or scarves- fun ones.