I am a survivor, that is I survived my daughters death with MPNST sarcoma. It will be three years in July that she was taken from me. She died exatally two years from the date she had confirmation of the cancer. Through the surgeries, radiation and chemo she held her head high and vowed to beat the odds. As those of you who have MPNST you know the survival rate is very grim. We were told at the Hillman Cancer Center "just go home and make the best of what you have." We explored so many options. We were told that there is not enough people who have MPNST to do studies becasuse it is so rare.
I just want all of you who have MPNST not to give up. There will be a cure someday. I wish each and every one of you to have the strenght that my daughter did. Don't give up. Keep your head high and tell who ever will listen, your story.
Well wishes to all of you