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  #151  
Old Wed Feb 12, 2014, 02:00 PM
mannythedog mannythedog is offline
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Location: Marble, NC
Posts: 103
Some things of Pop

https://www.facebook.com/photo.php?v...8817710&type=3

https://www.facebook.com/photo.php?v...type=3&theater

You may need to log into Facebook to see these, but they are two chapters in a video I made for him about 4 months before he passed. My profile public. It seems that they will show without logging into FB.
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #152  
Old Thu Feb 13, 2014, 12:47 PM
Neil Cuadra Neil Cuadra is offline
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Thanks for sharing these links, Scott.

It's heartwarming to see Bob's smile, whether it's with family or just because he's outside with a shovel in his hands. But it also reminds us how sad it is that you and your family lost him.

I think the best photo is the one with the matching "SON OF BOB" and "DAD OF SCOTT" T-shirts.
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  #153  
Old Tue Dec 2, 2014, 01:45 AM
apantoja apantoja is offline
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Thanks

Thanks for sharing the journey. Your dad was very strong and I'm sure he felt lucky of having you all on that difficult time.

I watched the Facebook video and after reading all your post I couldn't avoid to feel attached to your family.

I feel scared as my mother got her diagnosed just 3 weeks ago, I don't live in her same country and that makes things harder. I'm with her for the first 3 Vidaza cicles though. Reading this forums is helping me to understand MDS and what to expect.

Thanks for being a big contributor, I really appreciate the time you took to write about your wonderful dad, your mum and your family.
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My mother 72 has RCMD , Hb between 4.7 and 10.4 (after transfusions). Platelets 42k. Started 1st cycle of Azacitidine 5-2-2 in November 24th. WBC 4.8
blasts 4%. Intermediate-1 risk classification of MDS
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  #154  
Old Tue Jul 18, 2017, 01:15 PM
mannythedog mannythedog is offline
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Location: Marble, NC
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Eight and one half years later

Just a heads up. Mom passed from colon cancer back in April. She had Adenocarcinoma in her breast in 1981 and after many years in remission it came back with a vengeance in her cecum and sigmoid. I had the honor of having her live with us and being her primary caregiver. Belle, now 15 and Reagan 12 this month, he will get his letter from Pop. He knows about it and is looking forward to it. The last days, Belle never left her side. Mom was her Best Friend.

I have written a book on the joys and pitfalls of being a caregiver, and once it is edited, I will let you all know. The Marrowforums posts are a big part of the book, and also following the journey with mom also. Once the final edit is complete, I will put it on Amazon.

I was glad to hear from one member not too long ago that so many have been on here to follow Pops journey. I am sure he is thrilled that he can still help.

The book? Well, being a caregiver and having a family is hard on those waiting for you to return from the duty you volunteered to do, and some may feel ignored or neglected by all the work you do for others. Please, please always communicate with your significant other and family and demand help from others. Life is sad, and hard enough without having other heartache added to it after the death of a loved one.

Communicate often with those that are your support and family.

Scott,

Always Son of Bob
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #155  
Old Tue Jul 18, 2017, 03:41 PM
Callie Callie is offline
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Location: Fayetteville, NC
Posts: 22
Thank you!

Scott - First, I am so sorry to hear about your mom and am thinking of you and your family.

I also want to thank you for all of your posts over the years. When Dad was first diagnosed in Nov 13, I scoured the site for relevant, heartwarming, and inspirational threads - yours were so informative. The forum became a source of daily conversation for us. I, too, was Dad's primary caregiver during transplant, lung surgery, relapse induction chemo, and last hours. While difficult at times, exhausting, and frustrating (when he wouldn't do what needed to be done), it was such an honor to help Dad in that way, and I wouldn't trade those days and nights for anything.

We will bury Dad this afternoon, saying goodbye to a man who helped and touched so many. While death was probable, it was still unthinkable....

I look forward to reading your book, and like many others, thank you again for all you continue do!

- 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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  #156  
Old Wed Jul 26, 2017, 01:47 PM
mannythedog mannythedog is offline
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Hello Kellie

I feel for you and your loss. It was so hard losing both parents, even eight years apart, but being able to share almost ten years with Pop and just over eighteen with mom living near them and being there for them when they needed me was a joy, and also a pitfall in my life. Being the child they raised, I owed it to them to allow them to have their wish to pass at home, but I fear that lost my wife and best friend in the process.

It is a balancing act when your own family is involved as you take on the caregiver role. I will never regret being there for my parents, but I will always regret the way I handled things with my family and who I let into my home. Basically, marriage should never be put on cruise control when taking on such a great responsibility.

Any of you new to this thread and reading it, please communicate, don't be an island and don't be afraid share the stress because you're scared somebody close to you will think you are less than they think you are. If you don't include them in your burden, the physical and mental pain that could follow can be too much to handle.

Thank you for the outpouring of Love; and once again, I am so glad Pop's journey is able to help so many.

God Bless the Patient and the Caregiver.

Scott

Forever the Son of Bob & Georgianna
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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  #157  
Old Sat Jul 29, 2017, 02:44 PM
triumphe64 triumphe64 is offline
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Scott,
I am so sorry for these extra burdens. I hope your book will help others.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began 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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  #158  
Old Tue Nov 28, 2017, 06:19 AM
mannythedog mannythedog is offline
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Location: Marble, NC
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Finished

I am no writer of great manuscripts, but my book of joys, sadness and forgiveness is finished. I will be honest, I took on too much and was not prepared, but as a caregiver, it did not matter. There would always be family time after the caregiving was finished.

God bless those of you that support your caregivers, the caregivers and those of you receiving caregiving, we will always love you no matter what. We are your sons, daughters, husbands, wives, partners, friends and ultimately your support through your hardest times. We are here for you.

25% of all sales will go to a fund set up to give those visiting Katies world for infusions at out local hospital time off from reality, help with medical bills or maybe just a day at the spa.

https://www.smashwords.com/books/view/761848
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Scott, Son of BOB. My father, diagnosed 9/07 with "hypo-cellular acute bone marrow Leukemia" AA, AML & MDS. He was 77 years old 08/25/2008. He was being treated with Ara-C, blood and platelets w/needed. Stopped blood treatments 12/08/08 & passed 12/23/2008. Pop was the best father and friend.
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