Synovial Sarcoma - Online Support Group

Any other toddlers on here?


I’m new to this site. My son Mason is 2 and was diagnosed with synovial sarcoma November 3,2016 for a tumor in his right wrist/hand area. It’s in that spot between the pointer finger and thumb. We are getting ready to start chemo today at Motts children’s hospital. We’re using the ifsosfamide and doxorubicin with Mesna for the kidneys. They say this is the best chemo combo for this cancer. We just need to shrink the tumor so it can be disectable with hopefully no loss of function or amputation. I guess I just would like to hear from others with young kids and how they have managed. There is no better advice than from those who have been through it. Thanks.


Hi, I’m twelve and finished treatment a couple months ago at U of C. I have a friend who’s, 10 and was treated at Mott for a tumor in his neck. Even though there is a huge age difference I would just say distractions, friends, tv, anything to block you what’s happening. For me the smell of the mesna bugged me so we used a lavender spray, but not everyone is bugged by it. I hope this helps!


Thanks for the helpful hint. I never would of thought of that.


Hello, my son was diagnosed at age 9. He will be 10 in December. I’m sorry to hear about your 2 year old. My son received the same chemo’s and I think that’s the standard. How big was the tumor? My son’s tumor was 7-8 cm, we are not exactly sure because it was taken out in in two surgeries. All of this is very scary so I understand. Just keep thinking positive.


Sorry it took me so long to answer. The biggest part of his tumor is 2.5 cm and since I posted last it has went down to 2.0 cm with 3 rounds of chemo. My biggest issue is the possibility of amputation. The oncology ortho surgeon wants it shrunk as much as possible but now that we are going into round 5 I become more and more uncomfortable with doing “as many rounds as it takes” of ifosfimide. The long term side effects worry me although I understand it’s a necessary evil to do as much as necessary.