MPNforum Magazine

 by Ann Haehn

It is 10:00 p.m. at night, and snowing.

  Outside, all is dark and yet all is white.  Life’s little paradoxes. I can hear the wind’s heavy breath, gusting and swirling snow against the side of the

Ann and Genny

house, while I, thankfully, sit sheltered in my living room.  I flip on the gas fireplace and warm to its counterfeit illumination.

This year, I have hung no stockings.  I have put up no Christmas tree.  Truth be told, the autumn wreath still hangs on our outside porch wall, and yet Christmas is just six days away.  You would think I could muster the energy to at least remove Halloween from my doorstep.

I wonder that another sleepless night awaits me.  Insomnia is a way of life for me these days.  And so I spend  this night’s hours pondering about an article I am to write for MPNforum – an article about my daughter’s upcoming bone marrow transplant and why she has chosen this route, rather than the traditional method of ingesting new drug treatments.  I’m to write from a mother’s perspective.

It started five years ago

I could begin the article by relating the entire history of Genevieve’s (Genny’s) disease, how she was diagnosed five years ago with Essential Thrombocythemia, but is now diagnosed with Primary Myleofibrosis (PMF).  I could write about her symptoms and her disease progression and the numerous abdominal blood clots she has developed over the years.

In this narrative, I could include the list of 20 different pills Genny takes every day to stay alive – as well as the daily injections she gives herself – and the weekly injections she receives at her oncologist’s office.  Furthermore, I could write about the negative side effects many of these medicines induce in her.  Then, too, there is the incredible fatigue Genny endures and the constant bone pain that manifests as a dark specter in her life.  But really, it all sounds so clinical.  And Genny is so much more than her disease.

Gen and daughter Hannah

So my mind switches direction, and I begin to think that perhaps I should first relate what it is like to be the mother of a child who has an incurable blood cancer.  Why, dear reader, it takes your very breath away.  That is what it is like.

It was as though a phantom punched me in the stomach that moment in April when I was first told Genny has PMF, and my solar plexus is still bruised.  I wanted hope, but everywhere I turned, there seemed to be none.  Several doctors said to me, “your child has two to three years to live.”  The internet was no friendlier, but thankfully, some chat rooms with people who lived with Myloeproliferative Neoplasms (MPN) were much kinder.  These compassionate people made me realize my daughter was not a statistic.

Somehow, with God’s help, I eventually found the strength to pull myself out of the negative and to look for the positive.  Genny’s father

Gen and Dad

(my ex-husband) worked with me to put a plan in place.  A plan is everything in a time like this.  When all else feels chaotic and muddled, a plan at least enables one to take back some control.  And our plan was to go to Mayo Clinic.  With our sweet Genevieve and her dear friend Carolyn in tow, we set out like an Authurian court on a quest to find the Holy Grail, that cauldron possessed with miraculous powers.  Surely the Mayo guardians of MPN would offer us hope . . .

Then my mind goes in yet an entirely different direction, and  I think, rather than tell this story from a mother’s anguished point of view, perhaps instead, I should share with my readers what a remarkable young woman Genny is.  How at age two, she would throw one heck of a temper tantrum to get her way.  Strong willed and determined, she was never anyone’s follower – and to this day, she remains headstrong, and this will surely be her saving grace.

Perhaps my readers would be interested in knowing that Genny almost earned a black belt in Karate and would have done so if her Karate school had not closed, that she graduated from the University of Colorado at Colorado Springs with a Psychology degree, that she went on and developed a promising career, that she is a doting mother to 12 year old Tyler and eight year old Hannah, that she is a loving girlfriend to her boyfriend, Josh, and that she is a wonderful daughter, granddaughter, sister, niece, cousin, and friend.  But these are labels.  And Genny is so much more than labels.

Well, why are you jumping around in this narrative, you might rightly ask.  Go back to the quest for the Holy Grail.  What did Mayo tell you?    Mayo, indeed, was a wonderful experience, with compassionate MPN experts who in their own way offered us hope.  One expert suggested Genny consider a bone marrow transplant, indicating that 50% of people with PMF died within a five year range after diagnosis, while the other 50% lived 10 to 15 years with the disease.  He noted Genny already had this disease for five years.  Another Mayo expert was adamant that Genny not have a bone marrow transplant as he felt it was too risky; instead he wanted Genny to follow some new drug regiments — this same expert also indicated Genny had probably 10 years before she converted to AML.

At this point, I remind my readers once again that Genny is only 33 years old.

After trying some of the newer drugs and dealing with their negative side effects . . . after all the in-depth research, all the consultations with various experts in Rochester and Denver . . . after all the discussions with several individuals who also live with PMF, as well as discussions with others who have

Genny with friend Josh

successfully gone through a bone marrow transplant . . . after all this, Genny, in that strong will way of hers, has decided on the transplant route.

So, I go forward into isolation with my daughter on January 5, 2012, (Ed. note: This date has been moved back two weeks  due to problems with the donor.) with high hopes for a bright future for her.  I realize a bone marrow transplant is not the answer for everyone.  I would never encourage any individual to make such a life-impacting decision, especially when it comes to the MPN family of blood disorders and cancers, as the MPNs are so individualized.

But I do believe in a positive outcome for my daughter . . . and I want to share her journey so that others who may opt for a bone marrow transplant some day in the future will have hope.  And that is why I agreed to write this article when Zhen first approached me.  I hope to write a Part II, which will reflect Genny’s experience as she goes through the transplant process itself.  In the meantime, if any readers are interested, brief snippets of Genny’s transplant journey can be followed on our Facebook Fan Page at http://www.facebook.com/GennysHopeFoundation.

And speaking of our fan page, I do want to take a moment in this article to mention that I, along with numerous other wonderful volunteers, have founded a nonprofit organization called Genny’s Hope Foundation.  The purpose of the foundation is to increase bone marrow donor registrations significantly.  We are blessed that Genny has a perfect match on the international registry and we are so grateful to her anonymous donor.  Yet, many are never as lucky as Genny.

Up to 60% of those who need a transplant never find a match.  I find those statistics to be appalling.  It is all a numbers game, dear readers.  We simply need to increase the registry.  I have a mantra I say often: no one should die because a match does not exist on the bone marrow donor registries – no one!  We must all do our part to help our fellow human beings.  Please let your friends and family know about our website and help to spread the word so that we all can make a positive difference in the world.   Visit us at www.gennyhope.org .

In closing, for those of you who daily live with ET, PV or MF, please know you have a very special place in my heart.  I pray for peace and healing for all of you.   I pray the new drugs coming out on the market will be from that holy cauldron of miracles.  God bless all of you.

(And then…an e-mail)

From Ann Haehn:  ahaehn@xxxxx.com  Jan 3
 Genny’s donor in the eleventh hour has been disqualified.  Something in his last blood test came back which made it medically impossible for him to donate his stem cells to Genny even though he was a 10:10 match and even though he still wanted to be her donor.  Genny’s first selected donor is still not reachable.  The third choice has now been contacted and he has agreed to move forward.  He too is an international donor, and also 28 years old.  Genny’s transplant date has now been moved from Jan 10 to Jan 19.  We pray for Genny’s second donor and hope that whatever disqualified him is nothing life-threatening. We pray Genny’s third option will work out because these are her only perfect matches.  Even when you have a perfect match things can go wrong.

Take me back to the Contents

© Ann Haehn and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ann Haehn and MPNforum.com with appropriate and specific direction to the original content.