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  • #22341
    lgsaver3
    Participant

    Hello

    My name is Linda Grisafi and I have posted on this forum before. My husband was diagnosed on February 1, 2014 with stage IV mucosal melanoma of the maxillary sinus. At this time he has exhausted all of the trials and treaments available to him and is now in hospice care at home enjoying his days left with me and my daughter. I just want to thank everyone for all of the information and support we have received from this website from day one. The information we gather from here has been a blessing to us. Although 2014 started off with this horrific diagnosis, it turned out to be a blessing and one of our most memorable years. The treatments he received were mostly palliative but allowed us to fulfill a lifetime of dreams in a short year without the horrific side effects of chemotherapy. He did have surgery, Yervoy, PD1, Zelboraf, Mekinist and radiation, all with side effects but allowed us to live life and made him feel like he was in control. When a side effect got to be too much, he stopped and switched. We got to celebrate our 30th wedding anniversary, my daughter’s 21st birthday, our dream trip to California and Hawaii, a beach vacation to St. Petersburg, Florida, dances with my daughter which we videotaped as a memory for her wedding. He got to see her get engaged to the love of her life and saw them just make settlement on their first home,and a wonderful Christmas. None of these event could have been possible without the information we received from this forum. Although we knew the devastation we were dealing with from the day of diagnosis, we still were given hope with all the new research and breakthrough medicines available today. Thank you to everyone! Could you please keep us in your prayers now as we enjoy these last days with the hope that someone will benefit from the clinical trials he participated in and the research yet to be done to someday cure this hideous disease. God Bless you all, Sincerely, LInda

    #66244
    PrettyLight
    Participant

    I come to this site everyday to read, to learn, and to know that I am not alone. My husband was diagnosed 4 months after yours. We have had an amazing and wonderful life together and now, of course, we do not know what the future holds. I thank you for your post. I gather strength from your courage and wisdom. I wish you all the very best. Linda, too.

    #66245
    lgsaver3
    Participant

    Hello Linda Too :)

    You are not alone. Thank you for your kind words. I will keep you and your family in our evening prayers. More than anything, I have learned this past year is to live each day to its fullest and to not let the melanoma diagnosis and treatments take over our lives or stop us from fulfilling our dreams for each other. Most of the treatments and clinical trials my husband underwent had minimal side effects and allowed us to do so but when the treatment got to be too much or interferred with his comfort, we stopped and asked for something else. We had an open line of communication with his doctor from the very start and let her know what our wishes as a family were and she acknowledged them and put us first too. There are many hopeful drugs on the horizon and I pray that someday there will be a cure. Take care and God Bless you and your family.

    LInda G

    #66246
    buffcody
    Participant

    I’m very grateful this morning as I read the three posts here. I have had a much easier path to walk than the 3 of you and your spouses since I was diagnosed with Stage IV melanoma in May 2012. I have had some times since of living to the full but have had other weeks and months where the treatments and the disease itself have gotten me down but partly because I have let it more than it deserves. What I read here provides encouragement to me to not let it have as much reign over my life and to live as fully as I am able. Melanoma seems to want to take over our lives so we must choose as far as we possibly can not to let it. I want 2015 to be the year, even though I cannot predict the problems with the disease, that I don’t put it first. There’s no good reason for me to think that 2015 won’t be followed by many more years here, but I can still make this one special for my friends, my family, and me. Thank you for sharing your own journeys with all of us

    Frank

    #66247
    odonoghue80
    Participant

    Linda, I applaud your strength and courage. Thanks for sharing your thoughts during such a tough time. In some way this leaves me inspired, hopeful of my own battle, and for those who follow after your husband. I wish you and your daughter the best of luck going forward.

    – Shane

    #66248
    Linda G
    Participant

    Hello again. I am sad to say that my sweet husband Vince left us in February and is resting peacefully in the arms of our Lord now. His last days were peaceful and without regrets. Our hospice team at Bayada in Boyertown was God’s gift to us during his last days. We were truly blessed to have Rachael and Rebecca as part of that team. They made special arrangements with our pastor to have a special pre- wedding ceremony for my 21 year old daughter and her fianc√© to share with my husband and he was able to ” give her away” at this time, complete with veil, wedding cake, sand ceremony and photographer. What was most amazing is that although my husband could not speak, he was fully aware of every precious moment and at the very moment the pastor asked who gives myvdaughtwr’s hand in marriage, my husband reached his hand out and took hold of my daughters hand and squeezed it tightly and the photographer captured this precious moment on film. My daughter’s face is glowing at that very moment as was my husband’s. He never looked better! A memory she will cherish forever and his dream fulfilled before he left us! He passed peacefully the next day! God’s grace is truly amazing. Thank you all for the support we have received from you and your kind words. Our hearts are broken but our year was full of wonderful memories and no regrets. Thank you all.

    #66249
    Catherine Poole
    Keymaster

    Linda,

    Our deepest sympathy to you and your family. Your husband certainly had some wonderful care by you and your daughter, what a wonderful idea with the wedding. Hospice is filled with wonderful caring people I agree. I hope you might come to our Safe from the Sun gathering this year in Wayne so you will feel the support of many others who know this melanoma journey well. Would love to meet you as well. take good care of yourself.

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