Tuesday, October 8, 2013

A Horse of a Different Color... or Life with Myeloproliferative Disease

What is Myelofibrosis?

Myelofibrosis is a result of a build-up of scar tissue in the bone marrow.
It is also called bone marrow cancer or blood cancer.

It stems from a group of diseases known as myeloproliferative neoplasms or MPNs for short.

My husband Dave has lived with this since his diagnosis in 2008. His diagnosis was Myeloproliferative Disease with Essential Thrombocytopenia. His bone marrow was making about a million platelets and not much else.
With the help of over 58 separate blood transfusions and a drug called Hydroxyurea, he went into a kind of remission after about a year.

Fast Forward to this year 2013.
Earlier this year the Hydroxyurea stopped working.
He began losing weight and the fevers and weakness returned.
Another bone marrow biopsy revealed that the disease has progressed to myelofibrosis.
He has again become "transfusion dependent "

On the 15th of this month he will be admitted to the Brigham & Womens Transplant unit through the Dana Farber Cancer Institute in Boston.
After receiving several days of intense chemotherapy to destroy his diseased bone marrow, followed by one day of rest,
he will receive a stem cell, AKA/ bone marrow transplant. Then he will begin the long process of bone marrow engraftment, and rebuilding his immune system.
If you are familiar with the newswoman Robin Roberts story, then that will tell you something of what he faces.
Unlike Robin whose donor was her sister, Dave is getting his new bone marrow from a stranger.
Did you know that the odds of finding a suitable donor within one's own family is only around 30%?
70% of all people needing a transplant depend upon finding a match through a Donor Registry.

We know that this person is a 33 year old man.
We know that he is almost a perfect match without being a twin.
We know these few things because this is what we were told at Dana Farber.

What I know without being told, is that
this person is generous, and kind, and compassionate.
Two Old Warriors

 So every night I pray for this person, whoever he is.
 I thank God and the Universe for him.

Have a great week.

Love, Dixie

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