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#1
Fri Feb 8, 2013, 11:38 AM
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My Dearest Earl lost his battle with MDS - died Friday AM at 1:30
Hello All;
Thanks so much to each of you for your support. We left for Tampa on Monday night so that Earl could have his appointnment with Moffitt on Tuesday. We got there - had the blood work done, and were waiting to see the Dr. Earl's cognition became very altered, and I was worried he was having another stroke. They sent us across the street to another hospital since Moffitt does not have an E.R. We found out Earl had sepsis, and was also in the early stages of renal failure. We got him up to the ICU floor, and they began to force fluids and antibiotics. His kidneys did begin to function late Tuesday night, and even on Wednesday night - he voided . Today, in a 12 hour shift, he only voided 100 cc - and he kept getting continually worse. Both yesterday and today, he was not communicating at all - either on command, or in response to my "I Love You" - his eyes were rolled half way back into his head. Today, the Dr. asked if I wanted to intubate him, and I declined. At 1:30 on Friday Morning, he left this world to be with God and the angels. We will be heading back north for his funeral and arrangements. I am empty, and alone. Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS  . and I can't help the one I love the most.
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#2
Fri Feb 8, 2013, 12:22 PM
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Sending you love and comfort
Dear Beth,
I am so sorry to learn that Earl has died. You and Earl showed us all what true grit and true love are. I will keep you, Earl, and your family in my thoughts and I send you love as you grieve for your dear Earl. You had a wonderful life together. Lesley
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Lesley, daughter of Frank age 79, diagnosed with AML and then biphenotypic leukemia in August 2011. Completed 19 cycles of Vidaza treatment when it stopped being effective.
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#3
Fri Feb 8, 2013, 12:37 PM
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I am so very sorry for your loss . . . you both fought a great battle. My thoughts will be with you.
__________________
hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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#5
Fri Feb 8, 2013, 12:59 PM
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Dear Beth,
I am very sorry to hear about your loss. You and Earl fought a hard battle. My thoughts are with you. May the almighty give you loads of strength in this hour of grief. -RP
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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#6
Fri Feb 8, 2013, 01:35 PM
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Beth,
I'm so very sorry that Earl has passed. Despite his setbacks and hardships while taking Dacogen and Vidaza, my wife and I have always hoped that you and Earl would have the many more years together that you deserved. I wish that our sympathy and the online friendships you've made could make you feel less alone, but we know that nothing can make up for such a huge loss after 42 years of marriage. Even after Earl's stroke and hospitalization last month, this seems so sudden. Your love for Earl was always clear and you did anything and everything for him, as I'm sure he would for you. Please know that we are your friends and share your grief.
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#7
Fri Feb 8, 2013, 03:02 PM
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Earl
Dear Beth,
How sad that Earl lost his fight. Now he is resting in peace. Warm regards Birgitta-A
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#8
Fri Feb 8, 2013, 04:23 PM
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Oh, Beth, I am so very sorry that Earl has lost his battle. I know you are hurting and there are no words to take away that pain. But please know that we will be praying for you and that God will give you the strength to face the days ahead. I know you have probably neglected yourself, as caregivers seem to do.
Remember the good times and always know that you have been such a source of strength and hope for so many of us. Wish there was something more I could do for you. You are in my prayers. Love,
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#9
Fri Feb 8, 2013, 06:21 PM
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Dear Beth,
This is one of those times that words will never suffice. I can't tell you how sorry I am to hear that you lost your precious Earl. You have been such a source of support and information for everyone on the Forums in spite of dealing with the worst time of your life. I know that God is keeping you close as you face the days ahead. I will remember you in my prayers. I hope you take solace in knowing that Earl knew that had his own Angel of mercy who never stopped trying to find a way to help him and make him better. There is nothing more you could have done. God Bless you and yours at this difficult time. I know Earl is at peace and made whole again. Please let us know how you're doing as time goes by. You have become dear to so many of us. Take good care and thank you so much for everything. With love, Sally
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#11
Fri Feb 8, 2013, 08:17 PM
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Dear Beth,
As others have said, there are no words... I am so sorry for your loss. You both fought so long & hard. My thoughts are with you & your family. Sharnie xx
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#12
Fri Feb 8, 2013, 08:25 PM
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So sorry for your loss. My thoughts and prayers are with you.
__________________
Scott 51 yr SAA 3/2012. PTL 7, ANC 200. ATG finished 4/9/2012. 2/4/2013. TX independent:; PTL 133, ANC 3300, Hgb 13.4.
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#14
Fri Feb 8, 2013, 09:53 PM
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I am so deeply sorry for your loss. I will keep you and your family in my prayers!
__________________
Jill, daughter of Joe, age 76; dx mds RAEB-2 in 3/2010; Low wbc and low hgb, platelets normal; Put on Dacogen for 1.5 years, worked great until 3/12; Vidaza treatment next, 5 rounds - no improvement. Passed away from mds 11/13/12 after a long fight
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#15
Fri Feb 8, 2013, 10:14 PM
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Beth, I am so sorry! I have sent an email to you.
Earl is now free from suffering. You both fought a hard battle. Patti and Dean
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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#16
Fri Feb 8, 2013, 11:58 PM
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Beth, I am so sorry. God bless you. I will be praying for you.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#17
Sat Feb 9, 2013, 01:38 AM
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Dear Beth,
My deepest condolences to you and your family on the loss of your precious Earl. May he rest in peace.
__________________
Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee. www.caringbridge.org/visit/evanmacneil
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#18
Sat Feb 9, 2013, 12:29 PM
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Hello Beth,
Thank you so much for sharing your story and Earl's story. You have helped others by doing so. I am very sorry that you have lost Earl.
__________________
possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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#20
Sat Feb 9, 2013, 05:29 PM
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beth,
i'm so sorry for your lost... you're stay in my prayers. hugs béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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#21
Sat Feb 9, 2013, 11:49 PM
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Beth I am so sorry for your loss. I know you did everything possible for Earl that you could. He is now in Heaven and hopefully has met my Dad! You are in my prayers. Don't hesitate to pm me if you need an ear and shoulder.
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#22
Sun Feb 10, 2013, 12:04 AM
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Beth... We are sorry for your loss..Tina and I have you in our prayers
__________________
Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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#23
Sun Feb 10, 2013, 01:37 AM
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I am so sorry to hear about your loss. I followed yours and your husband's story.
My dad past away from MDS/Leukemia exactly 4 weeks ago and his situation is just as you described Went to a dr visit, dr said he is short on oxygen, rushed him to ER/ICU, had renal failure, become non-responsive, and then passed in his sleep. I know what you're going through because I see how my mom struggles. My heart goes out to you and your entire family. Blood cancer is the nastiest caner out there. God gained an angel. He is at peace and is no longer suffering Stay strong
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#25
Sun Feb 10, 2013, 02:34 PM
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Beth, I am so sorry to hear about Earl. May he rest in peace.
Vikas
__________________
Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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