Rhabdo Survivor

frenchi
frenchi Member Posts: 1
edited March 2014 in Childhood Cancers #1
Hello, everyone. This is my first time chatting as a "cancer survivor", but I have found that the disfigurement caused by my treatment has left me with more scars than the cancer itself. Please contact me if you have had a similar experience.

Comments

  • balcar-smith
    balcar-smith Member Posts: 1
    Nice to meet a survivor of RMS.

    My 3 3/4 year old son has been fighting Alveolar RMS for over 2 years and has the physical scars from Chemo, Radiation & Surgery to half of the Pelvis & Upper Right Leg, which will unfortunately get worse as the rest of him grows up and over 6 feet tall but the bones in the radiation feild are frozen in time.

    Arthur's smile, eyes and spiderman suit disguise his broken body. However, I finally borrowed a wheel chair yesterday as I can no longer carry him on my right arm (17 kg / 35 pound) and care for his 5 1/2, 1 1/2 & 8 Week old brother...

    I agree that the cure carries a high price, but the alternative is all to real and reoccuring for me as Arthur odds are still 0 - 20%.

    Best Wishes and Good Luck

    Stuart (aka Arthur's Dad)
  • lindazame
    lindazame Member Posts: 46
    Hi,
    Did you know there is a whole group of child/adolescent cancer survivors to talk to at acor.org. Look for the mailing list called LT-survivors. We have over 400 members including survivors of Ewings and Rhabdo who have various forms of disfigurement. It's a great group and has offered a lot of support and care to a lot of people.
  • dlrobins
    dlrobins Member Posts: 17
    rhabdo
    Frenchi, My son Kyle 21 has rhabdo in the neck. He is just beginninng into the chemo and radiation side of this disease. Where was yours located? Debbie
  • dlrobins
    dlrobins Member Posts: 17
    rhabdo
    Frenchi, My son Kyle 21 has rhabdo in the neck. He is just beginninng into the chemo and radiation side of this disease. Where was yours located? Debbie
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