Clear Cell Sarcoma of the Kidney

babylex
babylex Member Posts: 2
edited March 2014 in Childhood Cancers #1
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.

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • gloria.jones
    gloria.jones Member Posts: 2
    #3
    Clear Cell Sarcoma of the Kidney

    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

  • CarrieR
    CarrieR Member Posts: 6
    #4
    My daughter has CCSK

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

  • Summerwend
    Summerwend Member Posts: 1
    #5
    gloria.jones said:

    Clear Cell Sarcoma of the Kidney

    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

    CCSK

    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.

    wendy

  • starseeker76
    starseeker76 Member Posts: 1
    #6
    CarrieR said:

    My daughter has CCSK

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

    Hi sorry should have joined

    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! 

  • Live.Love.Laugh.
    Live.Love.Laugh. Member Posts: 4
    #7
    starseeker76 said:

    Hi sorry should have joined

    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! 

    CCSK

    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. 

  • NoahThomasLuceFights
    NoahThomasLuceFights Member Posts: 1
    #8
    Summerwend said:

    CCSK

    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.

    wendy

    my son has stage 4 ccsk

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

  • bingo124
    bingo124 Member Posts: 4 Member
    #9
    Summerwend said:

    CCSK

    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.

    wendy

    Ccsk

     

    my 6 m old daughter has been diagnosed with ccsk last week. 

    They dnt know the stage yet, by we'd we will know treatment plan. Plz let me know what to expect

  • William Xu
    William Xu Member Posts: 4
    edited June 2017 #10
    CCSK

    My daughter just diagonsed with CCSK back, when she is 1 years old, she diagnosed with stage 1 CCSK, (2 years ago), now we are wait for the operation.  in last 2 years, we take her travel the place she want to, she have good memories. 

    now cancer back, we shall be strong

  • Rui Filho
    Rui Filho Member Posts: 3
    edited March 2020 #11
    starseeker76 said:

    Hi sorry should have joined

    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! 

    Olá,

    Olá,

    Eu gostaria de saber como vocês estão. 

     

  • Live.Love.Laugh.
    Live.Love.Laugh. Member Posts: 4
    #12
    NoahThomasLuceFights said:

    my son has stage 4 ccsk

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

    Hi I just wanted to connect

    Hi I just wanted to connect with other parents who has a child with CCSK. My son 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.    

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