Rhabdomyosarcoma Support Group
Rhabdomyosarcoma is a type of cancer, specifically a sarcoma (cancer of connective tissues), in which the cancer cells are thought to arise from skeletal muscle progenitors. It can also be found attached to muscle tissue, wrapped around intestines, or anywhere, to include the neck area. It is most common in children ages one to five, and teens aged 15 to 19.
My brother was diagnosed in 2009 with Rhabdo in his lower abdomen. He completed his 64 week protocol and was then "cleared" in August of 2011. Last week he noticed an enlarged lymphnode in his neck and the doctor's confirmed that it was back. Max and his doctor's think that he is in a good place to be starting chemo again, and they're probably right, but I feel like I am losing it and losing it quick. I can't imagine the worst outcome but yet that's all I'm thinking about. Is that normal?! How can I get out of this horible place and be the supportive sister that I need to be! We have always been really close and I am just falling apart now.
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Aloha, I can hardly believe that no one replied but my heart goes out ot you as i read you plea for help. My grand-daughter Ally Girl was diagnosised with Rhabdo in May of 2008. This came a tirmendous blow to our family. See Ally is like my daughter I practically raised her from a baby. I learned quite a bit during this time.I'd like to offer some of those things i learned. I remeber when i realized how serious this disease is and i wanted in fact i did screm out "GOD WHY?" I cried and thought i was going to lose it then something happened to me, a clam came over me and said " NOTHING IS HAPPENING TO YOU, IT'S HAPPENING TO ALLY." This woke me up because the days ahead she would surley need her TUTU, I believe that ws the voice of reason because everytime i felt i wanted to yell, scream i remembered she was having it worse than me. We too got the all clear and rejoicing was all aound us but in Feb of 2010 we also recieved the devastating news that it was back. Ally,15 at this time begged me saying, "Tutu please don't make them do tht to me again." Because it's about her and not me I agreed to have her backon her decission. I watched the young lady triumph over her disease to finally win on July 16, 2010. You see what i learned is that there is only 2 ways to do do this as we watch. We can fight something we are powerless over or we can surrender to be the best support to the suffering. Honey Girl, Like Ally we all have difficult choices to make, we just pick up the pieces and draw stregnth from their weakness. May the Peace which surpasses all understanding continue to support you as you make choices which will govern you life. Aloha
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