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#1
Mon Jan 26, 2015, 02:25 PM
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Sad News and MDS
Hi I have not posted in here for a long time due to Amy's health . We wanted to let you all know that Amy did the toughest fight one can do , I can honestly say I tried everything a long with the Doc to treat Amy's Bone marrow .
We are sad to say as of Jan 26 ,2015 we are putting the battle to an end and taking Amy home with Hospice . The Lord is calling her home to be another Angel in Heaven ! Thank you all for listening ,prayers and for Gifts ,But most of all your love and compassion. Love you all and keep on fighting we will pray that one day they will find a end to all of this blood sickness . Sue and Amy
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Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014 8/18/2014 WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6 
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#2
Mon Jan 26, 2015, 02:44 PM
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I am so sorry for the news. You and Amy have been such an inspiration. Mom, you are a terrific person and mother.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#3
Mon Jan 26, 2015, 03:34 PM
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Sue,
We've followed your every word, and all the ups and downs since last summer, and your love for Amy shines through every day. Amy is so young and it's so sad that she didn't get what so many of us take for granted. You are doing what's best for her, as you've always done, and my wife and I wish you both peace.
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#4
Mon Jan 26, 2015, 11:07 PM
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Really sorry to hear this news Sue. No one could have done more than you have to give their child the best possible chance at life . May God give you strength and provide all your needs at this time. Praying for you.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#5
Tue Jan 27, 2015, 12:35 AM
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Dear Sue and Amy,
I am so sorry to hear your heartbreaking news! You have both fought so hard, and you have both inspired all of us so much! The world is a much better place for having you and Amy in it! I know there are no words to make things better, but, please, know that you touched us all, and we are all sending our love, thoughts, and prayers to you and all of your family!
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#6
Tue Jan 27, 2015, 09:20 AM
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Amy
How sad that Amy lost her tough fight against MDS/AML Sue! Hope she will be able to rest in the hospice!
Warm regards Birgitta-A
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#9
Tue Jan 27, 2015, 06:28 PM
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Sue,
I am so sorry to hear about Amy's prognosis. Both of you have been so valiant and strong through this entire experience. Your courage is inspirational to us all. My prayers are with you both.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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