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#26
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Dear Patti and Dean & Dru and Bob
I am sorry to hear the news. May you find strength during this difficult time. You are all an inspiration to the forums. My thoughts and love are with you. Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine. |
#27
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MDS
Dear Patti and Dean,
Warm regards to both of you! Birgitta-A |
#28
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Hello Patti and Dean,
I'm so sorry to see that the news are not good. You're a source of inspiration for all of us, It's need courage to decide to stop treatment and I feel in your words that you're both, you and Dean sure and in peace with your decision. You will be in my though and I'm praying for your interior peace, friendly regards and big 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. |
#29
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To each of you who have taken a moment to tell Dean and i you are thinking of us and keeping us in your prayers, thank you for all the support you have offered during this difficult time. Your heartfelt words touch us deeply and bring us comfort.
"Dying is what gives all our days meaning. If we lived forever on earth, what would another day mean to us?" 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 |
#30
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Dear Patti / Dean / Dru and Bob
You all are in my thoughts daily - One day there will be one heck of a reunion - Love and prayers to you. Susan
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan |
#31
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Dear Patti and Dean, Bob and Dru
Thank you for the courageous examples you have set to all of us. My thoughts and prayers are also with you. I pray that you will have the "peace that passes all understanding" and that you will never give up hope that you will meet again in the better land.
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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. |
#32
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For Patti and Dean, Bob and Dru
Under a dimly lit lamp post, let me take hold of your hand. We will travel on a journey, but not to foreign or exotic lands. Lets dip our toes in tranquil waters, warm and crystal clear Then bathe each other with understanding, to wash away any tears. We can climb the highest mountain, and rest up on its peak Where we can sit and chat for hours, to explore the answers that we seek. Come run with me through the grassy fields, on a sunny autumn's day Confronting all the doubts that bother us and chase all fears away. We can feed each other on tender morsels, not the savoury, just the sweet Gorge ourselves for hours on happy memories and other special treats. We will soar with the big majestic eagles, high up in the sky Where nothing bad can touch us, and stronger we shall fly. Our journey will take us along many roads, which direction is hard to say But I know that I have your hand firmly gripped, and I will never lose you along the way. For sometimes the roads may become rocky, and for some weary travellers the journey will sadly one day end. But I am so lucky my path led me to you and so blessed to call you my partner and my best friend. `·.¸¸.·´´¯`··._.··»-(¯`v´¯)-» Written by Honey »-(¯`v´¯)-»`·.¸¸.·´´¯`··._.·
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine. Last edited by Honeybun : Mon Sep 23, 2013 at 11:36 AM. Reason: . |
#33
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Dean, Patti, MagicBob and Dru,
Thanks for sharing your courageous struggles with this disease. You help all of us in so doing. You are in our thoughts. And big thanks to Neil for maintaining this forum and all your wise advice. Marie
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode |
#34
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Quote:
Honey, this is beautiful, thank you so very much for sharing it with Dean and I. It is even more special because you wrote it, we had tears in our eyes, but they were good tears.
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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 |
#35
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Patti and Dean,
I haven't been on the forum lately and am so sorry to hear that things have not turned around for Dean. I think Honey's poem was beautiful and said it all. Please know that we are all embracing y'all. I so wish there was something else to say or do. I hope Dean won't experience any pain during this part of his journey. But if he does, hopefully hospice along with you will be able to stay on top of it. That is one thing I've learned when caring for loved ones, you have to stay ahead of the pain and not wait until it gets too far along. I don't know personally how true it is, but Dr. Komrojki spoke at a seminar we attended and he said that the one good thing about MDS is that there is no pain. Let's hope he was right. God bless you both today and always. There is still a part of me that wants to hope for a miracle. And as others have said, Patti, you have been so sweet and supportive to so many of us when we were down, we are here for you. Peace and courage to both of you,
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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. |
#36
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Magic Bob and Dru
Magic Bob and Dru,
Well, the forum is just full of bad news today. So sorry to hear that the doctor stopped treatment last Monday. Hoping for peace and comfort. God bless,
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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. |
#37
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For Patti and Dean, and Dru and Bob:
{{{{{HUGS}}}}} Thank you for letting us bear witness to your faith and courage! It is a privilege. May you have peace in this part of your journey, and may your trust in the Lord sustain you. Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations |
#38
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Patti & Dean, I'd like to add my comments to those made by others in the past few days. Your courage has been inspiring, and your willingness to share your experience has been invaluable to those of us walking through the mire of MDS. I can relate to living & breathing MDS. It can truly consume you. I pray that now that you aren't fighting the disease you can walk through the next few weeks together with the focus on "together" and not on MDS. Know that God will provide you with the strength you need to face the future.
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine. |
#39
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Thank you
We are so grateful for each and everyone of you.
Thank you so much for the love, prayers, hugs, and caring thoughts, each of you are giving us strength and comfort in these final days. We are very blessed. Dean is very weak, not eating, and sleeping most of the day. I pray that he doesn't suffer very long. Love, hugs, faith, hope, prayers and a little laughter each day, 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 |
#40
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I remember Dad stopped eating and for the most part even drinking water. One day he ate like crazy. It was only a few days before he passed. Hon you know we are all here for you! be sure to take some time for yourself though. You are going to need your strength. I know you are probably spending every minute with him as I know you would. My heart is just breaking for you all. Praying he doesn't suffer. I pray for peace and comfort for you hon.
Elaine |
#41
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My thoughts and prayers are with you and Dean. I pray that you be surrounded by peace and love. God bless you...Hugs
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic... |
#42
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Quote:
We are all pray for what is best for us and that God will bless us with His comfort. My Hospice Care is excellent, just like I heard from others over the years. Patti, did Dean start with Hospice? We are all in God's hands and He will carry us into eternal peace. WITH ALL OUR LOVE, Dru and Bob MagicBob |
#43
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Dean is in Hospice Home
Quote:
Dear Bob and Dru, Dean was moved to the local Hospice home this afternoon. He was very,very weak and had no strength, also sleeping a lot and not eating. I am with him now and he is resting comfortably. He said he is tired and wants to say "good bye" now. We know he will be with The Lord and he will no longer be suffering. We will be together again, and he will watch over me until then. Bob, Dru and I have been blessed with two very caring and loving husbands who have fought this battle with courage,strength and dignity. We love you! I will keep each of you in my prayers. Thank you to everyone for letting us know we are not alone, and you are keeping us in your thoughts and prayers, you bring us comfort during this sad time. Love, hugs, faith, hope, prayers, and miracles! 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 |
#44
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Patti I am praying for you both. I feel so sad for you and Dean. Please know all our thoughts and prayers are with you. If you were near me I would come be with you during this rough time. Much love and peace hon.
Elaine |
#45
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Dear Patti, Dean, Bob and Dru,
My thoughts and prayers are with you all. You all have been so inspirational. Lifeguard
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent. |
#46
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Dear Patti and Dean,
I am so sorry to hear this news as with Tina and Billy. I totally agree that you will see your loved ones again. In the meantime I pray for God to comfort you as only He can. Patti, you know how to contact me. Please do so if there is anything I can do - if even just to lend a shoulder or an ear. With love, prayers and (((hugs))), Sally |
#47
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Dear Patti and Dean,
Wish you strength and comfort during this difficult time. -RP
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RP, Daughter of SK age 66, diagnosed MDS July 2012 |
#48
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Thinking of you guys.
Deb |
#49
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Patti I have had you and Dean on my mind today. I am praying for you both.
Elaine |
#50
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Thank you
Thank you so very much for your continued support and prayers.
Dean is still at Hospice, and the last two days have been so hard to watch. When Dean was first admitted on Thursday, he was very weak, but we were able to talk, mostly about how strong he has been through all of this, and our lives together over the last 23 years. We have been married 13 years, but have known each other since 1990. Saturday night Dean began hallucinating, trying to get out of bed, telling me to leave him alone, etc., He was sleeping for short periods, then waking up and fighting with people or things that weren't there. Yesterday he became more confused, he took off his hospital gown, won't let anyone put it back on, said there were cats in his bed, wanted to get up and fix the nail in the wall, etc. He has no idea who I am. The nurses say he is possibly having small bleeds in his brain, because he probably has no more platelets. Ten days ago, at his final labs, his platelets were 8. Around Dean's eyes, the skin is a deep purple, and he has black bruises all over his arms, and neck now. I hope it will be over soon. This is so difficult to watch. Even with all the medication, he is not sleeping, just for short periods, then he tries to get up and out of bed. I can't leave his room, when I have to use the restroom, I need to ask the nurse to stay with him. Tonight there is a volunteer that is with him. The nurses at hospice told me to go home for a few hours and rest, but I can't sleep. I am physically and emotionally exhausted, I try to stay at Hospice constantly, but it has been five days now and I needed to come home tonight, although I can't sleep and will be going back to Hospice in a little while. As many of you know I have no family members, I am alone, that is making this even more difficult. I feel so alone right now. Thank you for letting me write this post. I haven't slept all night I just don't know what else to do.
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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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