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    Prayers coming your way. Please do not give up hope. I do not remember if you have sought out alternative treatements, but perhaps this would give you some direction. The Mayo also turned my husband down and we are still fighting this terrible disease. Stay strong.


    So, sorry to hear your news, Sophie. We think about you daily and you are in our prayers. You are loved by so many! Thought you would like to know we are up to 33 letters and they keep coming! I wish, I wish you had better news. You are a wonderful lady and you have touched many and we hope you will keep brightening our site with your posts. Please keep us informed about you!


    Sophie, I am thinking about you a lot. You are loved and not forgotten. Please know that I keep you and all of our “family” here on this message board in my daily prayers.

    I’m sorry about the Mayo clinic. That is a blow. All we can do is is all we can do. I find great comfort in my faith in God. This disease robs us of any control over our lives. Yet in this wilderness and valley of death, we can put our faith and trust in Him. He will never leave us or forsake us, and will bring us home to him when our earthly pilgrimage is over.



    I too am sorry you didn’t hear what you were hoping for from Mayo. You are in my thoughts & prayers. I sure hope the letters to Oprah do some good. We need to get the word out & educate people more on this terrible disease.



    I am so sorry that you didn’t hear the news that you wanted to hear from the Mayo Clinic. We are all thinking of you and sending prayers your way. I agree with you – those letters going off to Oprah are the bright spot in this otherwise very bleek week. I am so hopeful that they will read them and decide to do a show about cc (and other orphan cancers).

    Hugs to you,

    Joyce C


    Dear Friends, what an emotional day after reading some of your posts. I also got my letter back from Mayo Clinic in Rochester from Dr. DaGorney concurring with my City of Hope doctor that there is nothing they can do for me there. I don’t know what to do now.

    Thank you, Jeff, for giving me the information about him. He seems a very caring doctor.

    Thank you, Lainy, for sending off all the letters. I pray Oprah has some compassionate readers and won’t pass us aside.

    Love and prayers to you,

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