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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jul 11, 2017, 09:41 PM
Callie Callie is offline
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Location: Fayetteville, NC
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Bailie...Day+1059 Final Goodbye

You knew him as Bailie (real name Gary). I knew him as Dad - the best Dad a daughter could ever have. You knew him as an avid poster to the forum; someone always welcoming a new member; someone who has gone through so much and continued to overcome...I hope an inspiration to many.

I am writing this post - a post I hoped to never write - to regretfully tell you that Dad died at approximately 3am this morning. He was at Day +1059 from transplant. But after relapsing in Mar 15, going into remission for 2 years before relapsing again in Apr 17, the disease finally was too powerful. He spent April in the hospital undergoing induction chemo, which fortunately worked - he came out with zero blasts. He was just so weak, though. The subsequent round of Dacogen and follow-on DLI (Donor Lymphocyte Infusion) brought on new troubles. He went in for routine lab work last Monday, but was admitted instead. And even though his blasts went from 40% on Monday to 70% on Thursday, the doctors were hopeful and had a plan. We truly thought he'd be coming home this past weekend. He wasn't able to, though, and we said goodbye to a wonderful person today.

I've never posted here before - I left that to Dad. But we checked the forum in the mornings and evenings, and always discussed the new threads - being excited with and for those doing well; being sad for those in tough situations and especially the Families of those lost. All of you have been like Family these past three years and I can't thank each and everyone of you enough. We couldn't have gone through this whole ordeal without the support and knowledge of everyone on the site. Neil - thank you, as always, for this amazing site and never ending support. RAR and DANL - you both have been my go-to people since transplant - please continue your fight and know Dad appreciated you both so incredibly much. Cheryl C and others - thank you for checking in on Dad when he was quiet this past month.

This has been such an all-consuming journey these past three years. He wasn't ready to go. But he knew the statistics were against him and he was so tired and weak in the end. He died, though, in the manner he hoped - quietly, peacefully, and without great fanfare. It will be so difficult not having Dad here. He was Dad and I loved him so much.

I wish all of you the very best. Please continue the fight. If there's anything I can assist with, from the caregiver standpoint, and from someone who was right there with Dad the whole way, please let me know. I know Dad would like to continue providing his "wisdom".

With such overwhelming sadness,
Kellie
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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  #2  
Old Tue Jul 11, 2017, 10:21 PM
JordanN JordanN is offline
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Dear Kellie,

From another daughter who lost another amazing dad, you have my deepest sympathies and truly heartfelt condolences. Your dad was a wonderful inspiration and source of knowledge and comfort to so many of us on this forum, and he will be deeply missed here. He always amazed me with his positive attitude and resilience when facing so many set backs (he had more than his far share of those), and he turned his misfortune into hope and help for all of us here.

Please, know that you are in my thoughts and prayers and that hugs and warm wishes are being sent your way!
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  #3  
Old Tue Jul 11, 2017, 10:27 PM
triumphe64 triumphe64 is offline
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I am so sorry for your loss.
Thank you for letting us know.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #4  
Old Tue Jul 11, 2017, 10:48 PM
Meri T. Meri T. is offline
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My sincere condolences

May he rest in peace. Such a wonderful soul.

Meri
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  #5  
Old Wed Jul 12, 2017, 01:54 AM
DanL DanL is offline
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Kellie,

I am very sorry to hear of your father's passing. He was a genuine inspiration to me, and I am sure many others. He was always positive, strong, and encouraging, and an example for all in the forums, and I am sure outside as well.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #6  
Old Wed Jul 12, 2017, 02:15 AM
Hopeful Hopeful is offline
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I find it hard to believe that bailie is gone. I am so sorry for your loss. He was an inspiring voice and will be missed. Peace to you, bailie and to those that you left behind.
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #7  
Old Wed Jul 12, 2017, 10:57 AM
rar rar is offline
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I will miss your father's factual and emphatic posts. He can't be replaced. I was just over a month ahead of him on on the transplant cycle so I have an idea of what he went through, but every case is different. I mourn your loss.

Ray
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  #8  
Old Wed Jul 12, 2017, 11:33 AM
Sue&Dave Sue&Dave is offline
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The boards have been eerily quiet in the past few weeks and the reason is now clear. I am so sorry to hear of his passing. Your Dad was among the first to welcome us to this board, and we learned a lot from him. My fervent prayer is that no other daughters, sons, loved ones, spouses or caregivers ever have to post as you did, but the awful reality is that we will..... Hugs to you and your family. Sue
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  #9  
Old Wed Jul 12, 2017, 11:37 AM
Neil Cuadra Neil Cuadra is offline
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Callie,

Ruth and I are so sorry to hear this news. You have our heartfelt sympathy on the loss of a wonderful man. Gary reached the milestones of age 70 and 1000 days post-transplant, but he deserved more.

For three and a half years since joining this community, Gary shared his wisdom and his concern for others: welcoming, encouraging, advising, supporting, and consoling strangers who became online friends. Let's not forget that he was also a veteran who served his country.

My wife and I think that Gary's positive attitude was a major reason that he made it past so many obstacles and kept his head up through multiple setbacks. It's clear that the support of his family was another reason.

It is very generous of you, Callie, to share news of your father's passing with us in this time of mourning. We will not forget him.
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  #10  
Old Wed Jul 12, 2017, 02:39 PM
worriedmama worriedmama is offline
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So sorry for your loss. Wishing you and your family peace during this difficult time.
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  #11  
Old Wed Jul 12, 2017, 09:12 PM
Cheryl C Cheryl C is offline
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Dear Callie and family

My deepest, sincere sympathy for the loss of Bailie (as we knew him). He was such a positive, learned, encouraging and supportive contributor to this forum. I've missed his regular posts lately and will continue to do so. I recall his recounting of the long trip with you and dogs when you moved and his love for and pride in you came through. It's a big loss for us but massive for you and I'm sending you a hug online. God bless and comfort 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. On watch and wait since Feb 2012. IVIg 4-weekly. BMB Feb 2014 - no blast transformation. 2016 still stable tho' more frequent infections.
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  #12  
Old Wed Jul 12, 2017, 11:30 PM
maggiemag maggiemag is offline
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Oh, no, please not Bailie.
Callie, thank you for letting us know. Such a difficult post for you to write.

We certainly will not forget him.

I found his optimistic but-with-eyes-wide-open, knowledgeable approach to this stupid disease, catching. It was calm, measured, and based I think on the fact that knowledge is power. Definitely an inspiration to many, and irreplaceable. Rest in peace, Bailie.
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD
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  #13  
Old Thu Jul 13, 2017, 11:46 AM
Annettec Annettec is offline
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Dear Kellie & family,

So very sorry for your loss, my heartfelt condolences to you and your family. Your father, Gary (aka Bailie to us...) will most definitely be missed by one and all on this forum. He openly shared his knowledge and always had great advice for everyone, when asked. He was unassuming, kind and so very positive! It's simply not going to be the same without him....just like when Brigitte left us..


I'm also a caregiver. My mother (now 80) was diagnosed with MDS high risk II in May 2014 and while Vidaza gave her time & quality of life, she has been unwell since Easter and while she miraculously survived a major infection & felt relatively well for a few weeks, she is now getting weaker, heart palpitations, heaviness, etc etc so I know we're getting close......although she isn't in any pain per say, it's still difficult to watch this process.... They are no longer giving her platelet transfusions so it's just a matter of time....

Take care and know that your father is now at peace.
hugs
Annette
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  #14  
Old Sun Jul 16, 2017, 06:01 AM
lisa3112 lisa3112 is offline
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So sorry for your loss. Bailie always helped others on this page. He had so much knowledge, and if he didnt have an answer, he tried to research the topic. Such a fighter, he will be missed.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #15  
Old Sun Jul 16, 2017, 09:20 PM
Lifeguard Lifeguard is offline
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Dear Kellie,
I'm so sorry for your loss. Your Dad was a wonderful inspiration to me and he will truly be missed. My prayers and thoughts will be with you and your family. Rest in peace Bailie.
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Age 43, Diagnosed MDS Del 5q October 2008, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent.
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