Molly - a Patient's Daughter

Molly - A Patient's Daughter Myelofibrosis (MF)

"He no longer wears a suit to the office, although he runs the Foundation with the same rigor and intensity he brought to his corporate life. 

...It’s been awesome to watch – both as his daughter, and as a recently elected MPN Research Foundation board member."

By Molly Rosen Guy

In the summer of 1997, in between my sophomore and junior year of college, I remember walking across Wells Street Bridge in  Chicago with my Dad – Robert Rosen. He was talking about some numbness he’d been experiencing in his fingertips.

“I don’t know what’s going on,” I remember him saying. “I’ve seen a bunch of doctors, but no one seems to have any idea.” He seemed very scared.

A few months later, during Thanksgiving dinner, my Dad told me and my two siblings that the numbness had traveled to his toes and gotten much worse. He told us he’d been bouncing around from doctor to doctor, and no one had been able to tell him what was wrong. I remember hearing the word leukemia, a lot of whispering, I remember seeing mascara tears on my Mom’s pillow. Needless to say, it was a really terrible time in the Rosen family.

I grew up with a Dad who worked in real estate, who left the house every day at dawn in a tight tie, with a packed briefcase. He was not (much like every other member of both my immediate and extended family) – a nonprofit guy, a science guy, a medicine guy, or a numbers guy, to say the least. He was a pragmatic, 9-5 businessman who spent his days making deals and bossing people around in a crisp starched shirt. Very different from the Dad I have today.

In the past thirteen years, I’ve watched my Dad grow the MPN Research Foundation from a teeny, tiny little seed of nearly nothing into a an esteemed research and advocacy organization that has awarded almost nine million dollars to promote, fund and support the most innovative and effective research into the causes, treatments, and potentially the cure for ET, PV, and MF. He balances his roles as both chairman and patient with equanimity and open mindedness.

He no longer wears a suit to the office, although he runs the Foundation with the same rigor and intensity he brought to his corporate life. Through working with the MPN community, my Dad has become a softer, more teachable version of the Dad I grew up with. He’s learned to learn, and listen. Quite a far cry from being the real estate guy in a tie who had no clue why his fingers were numb.

It’s been awesome to watch – both as his daughter, and as a recently elected MPN Research Foundation board member.

Happy springtime. Sending light and love to all of you and your families. Thanks for letting me part of your journey.

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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