International MPN News, Science & Opinion

January, 2016

Remembering Kathy Dubin Flynn

All flesh is grass
And all its loveliness is
As the flower of the fields

kdf at piano

From Kathy’s mom, Patty Dubin:   “The Serenity Prayer was her guide, she refused to let cancer win.”

Jim Flynn remembersKathy Flynn was always the light in the room. People couldn’t help be attracted to her because of either her infectious smile or her incredible intelligence. Most times it was both…KDF the family croppedMy kids and I are slowly adjusting to our new “Normal.” We will go on with our lives just as Kathy urged us all to do. She made sure that we sought happiness and joy, not sadness and sorrow. Still, it is difficult not having her here with us.  (Editor’s note: Cyndy Morreale’s ballad, “It’s OK to Cry in a Country Bar” is attached as a comment to Jim’s reflections.)  (Story, photos here.)

Ann Haehn remembers Kathy…

Well Kathy, here I sit.  At my computer.  Trying to find the words to write a tribute to you.  My friend.  My soul sister.I knew you four years.  Only a short four years.  But it feels like a lifetime.  That’s how deeply we connected.  That’s how much we touched each other. (Story, photos here.)

Chris Harper remembers Kathy…

My Hillbilly Friend With a Transatlantic Sense of Humour.  I met Kathy Flynn online on 4th November 2011. We were both months out of transplant and soon become friends. We shared many traits including her wicked sense of humour and often messaged online as we recovered. When she told me she was in Texas I responded ‘Wow, first time I have met a hillbilly’ She responded ‘Hah! KathyMy parents would love that!’ And she has been hillbilly or KDF to me ever since. (Story, photos here.)

Bonnie Evans and Charlie Nielsen remember Kathy…

When I got the invitation for Kathy Dubin Flynn’s 50th birthday party on October 24 in New Braunfels, Texas, I was doubtful that I would be attendingKDF with baby since my husband, Joe, has passed away on 8/31 so I replied as a “maybe.” When I saw that Ann Haehn and her daughter, Genny Stepaniak who is a SCT survivor. I remembered that Kathy, Ann, Genny, Marina Sampanes Peed and Cyndy Morreale had a dream that we would all meet together someday. (Story, photos here.)

Marina Sampanes Peed remembers Kathy…

Some people are in your life all your years and they never really know you.  If you are lucky, a handful of people will enter your life and know you so intimately that your vulnerable, insecure self feels seen, heard, and affirmed. When paths intersect during a fragile, frightening period, that gift is profound. I am so lucky that Kathy Dubin Flynn came into my life at a crucial time and lifted me up in ways no one else could. (Story, photos here.)

Dr.  Arch remembers Kathy…

All the Likes and supportive posts that Kathy and I exchanged over the years are finished now, but they live in my heart as one of the very best positives of my life. The high value and simple faith and courage that she so bravely demonstrated in her all too brief life speaks with much more eloquence than I could ever write.  Best, dear friend.  Arch

Zhenya Senyak:   What are we to each other? 

We worked together, shared emails, projects, photos. But I never met Kathy Dubin Flynn in the flesh.

For that matter, I never met Jeremy, Arch, Sam, Ian, Karl, Patsy, Ann, Julie, Elizabeth, Barbara or any of a thousand people in our MPN village, living and dead.  KDF and Genny cropped resized Like most of us,  I live  with  people I have never met in the physical world.  Their stories, their spirit,  fill my thoughts today.  It has taken a full long lifetime for me to begin to understand the power of this multitude. Kathy’s death brings it all into sharp focus. She had a powerful influence on those who knew her. She has a powerful influence on us now.

So what are we to each other in our  MPN community, a world that exists largely in cyber space?  (Opinion here.)

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Beatrice Larroque. Looking back, looking ahead…

Day + 92…  92 days ago, I received 9 million stem cells from a perfect stranger, 9 million life-giving cells, Beatrice at Galleryand I still can’t wrap my mind around it.I never imagined I would have a stem cell transplant.

Well, it is not quite accurate, I always knew it was a very remote possibility, but I was hoping for a new treatment, a new drug, a magic pill that would cure MF.  (Story, photos here.)

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Dr. Ruben Mesa, our MPN Interpreter-in-Chief, Ruben Mesa on ASH 2015  https://youtu.be/OtHOl3LZ8iw   has just delivered one of his signature summaries of the ASH 2015 MPN highlights, covering genetic discoveries, clinical trials, our real therapeutic options across all the MPNs and a glimpse of the future.  His team has led the work in symptom assessment, relevance of our symptom burden for treatment and the fatigue assessments and here he wraps it up for us.   Get a cup of coffee and sit down for this short video and a clear explanation of what’s what.

bARBARA AT cure

 

Is there a good time to have an MPN?

Here’s  Barbara Van Husen, https://youtu.be/4rXX0Hwr2Gc the MPN Research Foundation president surveying the terrain and using the Cure Word.

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 finger pointing small  MPN Advocacy & Education sponsors free seminar in Seattle, January 28 for details: Here.

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Real help — when you most need it.

helpinghand

 

Welcome to  MPN Community Support, a group of patients volunteering to help fellow MPN patients find their way through the gnarly issues of treatment.   Marina Sampanes Peed, director said:  “Most of us have thought ‘wouldn’t it be nice if…’ a single website could reflect the multitude of resources we may need during our MPN journey… www.mpnsupport.com isn’t going to change the MPN landscape — but we hope it will be an easy-to-navigate site for MPN patients who need help.  

Questions, additions to the resource guide or to volunteer to assist patients through the MPN Buddy System, write her at:  mpnbuddies@gmail.com

five stars cropped

MQJ3

 In the current MPN Quarterly Journal issue:   “Looking forward: Novel therapeutic approaches in chronic and advanced phases of myelofibrosis,” by John Mascarenhas. The complete Hematology 2015  paper   (Here.)
header linegold starJust Updated:  The New List of Patient-Recommended Hematologists 

The MPNclinics – 302 answers to 141 Patient questions… with Index

mGEN-logo FINAL tightThe MPN Genetics Network .. Report on CREATE

The Catalog of MPNforum Articles. ..

Subscribe to MPNforum

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Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, list your Blog, or write an article. (We’ll even help you get started.)…Letter to the Editor

For information  Contact: ourMPNforum@gmail.com

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2016. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted  provided  full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

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