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anyone know of a child with "adult fibrosarcoma"?

mayasgrandma
mayasgrandma CSN Member Posts: 1
edited March 2014 in Sarcoma #1
Our granddaughter, Maya Jones, was diagnosed on December 24, 2008 (age 2) with "adult" fibrosarcoma in her upper right arm. Had chemo that did nothing (tumor was 100% alive when taken out April 1st), pre and post-op radiation. Clean but not wide margins. No metastasis at diagnosis, but the tumor was, according to the surgeon, deep, aggressive and large. (It wasn't all that large, but when you put it in a two year old's arm, it sure seemed big - nearly 5 cm). I can't find any other children with fibrosarcoma. Only one girl in England some years ago who had fibrosarcoma on her spine.

would love to find other families who have a child with this type of sarcoma.

Thanks for passing the word along anywhere you know...
Rebecca Jones, Grandma to Maya Jones (www.caringbridge.org/visit/mayajones
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  • jjasoliy
    jjasoliy CSN Member Posts: 2
    edited December 2017 #2
    Infantile fibrosarcoma

    Hi

    My sisters new born son(in india) is diagnosed with infantile fibrosarcoma in right leg. what we are hearing from doctors is prognosis is good. chemo followed by surgical removal is what they are plannign to do next week.

    its very painful time for my sister and entire family. 

    how is maya doing after treatment ?  what are the things that you would suggest us to keep in mind ?

    i appriciate any suggestion or help.

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