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Clear Cell Sarcoma of the Kidney

Posts: 2
Joined: Jul 2007

Hi - my 3 year old niece was just diagnosed with clear cell sarcoma of the kidney and I am trying to see if there are any others that have a child with this form of cancer. Any response with some information would be greatly appreciated.

gloria.jones's picture
Posts: 2
Joined: Jan 2013

My three year old has clear cell sarcoma too.  And I am also desparately searching for the few others out there who are dealing with this.  Please let me know if your neice is doing well now.  I realize this post is quite dated.  Lots of love to you and yours, Gloria

Posts: 1
Joined: Jul 2013

Our little girl who just turned two is also struggling with CCSK and was diagoosed stage IV two months ago. We have been through so much since then and would really love to meet others that are trying to find thrim way thru this rare disease.


NoahThomasLuceFights's picture
Posts: 1
Joined: Aug 2015

My son is 3 with stage 4 clear cell sarcoma of the kidney also attached to the liver

Posts: 3
Joined: Jun 2015

Hi I just wanted to connect with other parents who has a child with CCSK. My son's name is Henry and he was diagnosed at 22 months old. We were first told they believed it to be Wilms tumor but after a week and a half we were told it was CCSK. Chemo has been a difficult journey and we are now about half way done. He's doing very well and it amazes me how resilient he is. When I see how strong and brave he is, I tell myself I need to be just as strong and brave. I hope your son is doing well and I wish you and your family the best.    

Posts: 6
Joined: Sep 2012

I would like to talk to other parents/relatives who have experience with CCSK.

Posts: 1
Joined: Oct 2014

Hi sorry should have joined on here sooner! I would love to talk and share experience with parents or survivors of CCSK. I hope your daughter is doing well! My son was diagnosef with CCSK at 2 1/2. He is now almost 12! Thank heavens! Would love to share any information to help others! 

Posts: 3
Joined: Jun 2015

My son was just recently diagnosed with Stage 1 CCSK. He is currently undergoing treatment from the COG protocol (Regimen I for 25 weeks). I too would like to connect with families going through this very rare form of cancer. It's been very difficult but we are trying our best to stay strong and remain positive for our kids. 

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