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.
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)
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.
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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