Rhabdomyosarcoma-my 23 month old diagnosed with it

soksi Member Posts: 1
edited March 2014 in Childhood Cancers #1
Hi, looking for parents, survivors, etc of this cancer. my whole family was crushed when my baby was diagnosed with embryonal rhabdomyosarcoma of orbit, cranial extension.

the doctors said surgery was "impractical" because of the location, it was like behind the bone that hold the eye, also some extension into the brain tissue near the eye area, and also even into the sinus around the right side of his nose..he just started chemo last week and radiation yesterday.he is "scheduled" (can't think of a better word for that)for 1 yr chemo as of now, and 5 weeks radiation

please... if anyone knows anybody who has had this type and area of the cancer pls email

i'm desperate,i look at my little boy who looks so beautiful, that i sometimes forget he has this cancer inside of him.. but then it just hits me again just like that,i cannot believe my own baby has it and just breakdown again. please please i need more info about the location of his cancer, experiences, anything.. thanks


  • Judy512
    Judy512 Member Posts: 11
    Do you still visit this site? How is your son?
    I just signed on to this site today and happen to be a 32-yr survivor of embryonal rhabdomyosarcoma -- diagnosed at 17 and treated at UCLA. My prognosis was fatal...and agian...that was over thiry years ago.

    I have much to share and wish I had come across this a year ago. I do hope your son is well. I have a website: Beneath the Surface, www.beneaththesurface.com created to help those with facial difference...a product of the radiation and tumor which covered the entire left side of my face. I hope you will visit my site which also has my personal email address. I would love to hear from you, especially if I can help in some way.