Tuesday, September 27, 2011

In the Face of Histiocytosis...

This is the face of Langerhans cell histiocytosis.  It's warped and skewed, a permanent sneer formed from thick scar tissue in the cheek bowing the nose, drooping the eye, curling the lip.  It's bound to stay this way.

There will be no fixing it, just like there's no fix for histiocytosis - only one treatment protocol after another 'til remission is hopefully reached,  heavy make up to deal with the aftermath.

Whaaaa???  What is she talking about??  Mayree -- you done gone somewhere beyond your usual self.  Well.  Not really, folks.  I'm not defined by a disease but it has certainly set parameters and helped to define my life.  It's Langerhans cell histiocytosis, formerly called histiocytosis x and also known as eosinophilic granuloma.  It's an orphan disease affecting approximately one in 200,000 births.  It's a "Side of Life"  I've a unique perspective on.

Parents of infants born with any of the five (or so) histio diseases are horrified at the lack of standard treatment available.  Children develop it without warning, the diagnosis often taking weeks and months, local disease databases being just that limited.  Adults, like myself, that develop it later in life are tasked with becoming our own best advocate;  the blurbs in standard medical textbooks insufficiently lacking with respect as to how to answer any of ten thousand questions patients and parents constantly have.

We're classified as having an orphan disease.  That means there are too few of us that die from it to warrant research by the government, not a pleasant thought when the government takes better notice and care of others.  I pay my taxes.  I vote.  I have an orphan disease and am insignificant to the country my niece's husband is defending at this very moment.  Go figure...

Annnnyways.  September is Histiocytosis Awareness Month.  It's not a pretty disease.
I can attest to that....

Here's a link for you.  It's where I found Dr. Ken McLain, pediatric hematologist oncologist/histio researcher with Baylor/Texas Children's Clinic in Houston.  I've not been able to get back to see him in the last seven years, life interfering with the best laid plans of mice and men, but I thank him whole-heartedly for his untiring research and treating scared (and scarred) adults like myself, allowing a sense of normalcy to return from the upheaval of dealing with this disease:


Please.  Don't EVER take my word for anything.  Find out for yourself.  Be histio aware.  Google it:  Langerhans cell histiocytosis.

And not ONE word about all the canine references, okay?  That's not funny at allllllll.......


  1. This tells us that you have a bigger, better, and braver heart, Dear Lady. Our love to you, Maryb

  2. Mary, you are beautiful inside and out! The way you phrase your words, design your cakes, decorate your home, love your family...your beauty just radiates and defines you, not that old Langerhans cell histiocytosis! You are one brave, inspiring, strong lady, and I'm so glad I found you!
    ~Linda Stuckey~

  3. Mary, this is a touching and heartwrenching post that tells me of your great determination in life. You are an inspiration to me. Thank you for becoming my friend, albeit on fb, but also by sharing our lives electronically, we have become friends of the heart. Today, I pray for the peace of our Lord to comfort you as you continue your search for answers.

  4. Keep up the fight and the faith, beautiful girl.
    The Minnesota Farm Woman

  5. Thanks for sharing from ur heart. U are a very special lady. That's why God has given u special grace to walk each & every day in His beauty, until u get ur glorified body! Amen? Love u Mary and love ur writings

  6. Thank you for befriending me, as well. I have read some of your entertaining and well-written posts. Sending good thoughts to you and your family. Thanks for the shout-out for adult onset histiocytosis (goodness, I never thought I would have to learn to spell such a word). My 26yo son is dealing with his first remission of LCH, first diagnosed in October, 2008. I hate saying "first" remission, but you captured the true essence of this disease that won't give up. We have dealt with the doctors, the treatments, and the INSURANCE. Apparently, young adults are not supposed to get really sick, because our system does not know how to handle young people who are in college, paying their own tuition, and working to support themselves. How DARE they get sick?

    My son is in month 4 of his second twelve month chemo regimen. He has graduated from college, has a full time job, and is the strongest person I know. He is covered by COBRA for now. Thank God for that.

    Enough about all that tonight. Wishing wellness to you and yours from your new Colorado friend, Mary, who would love to be referred to as Mayree! I grew up in Michigan, where they most certainly do not draw out their vowels! I was known as 'Mare', yet I am NOT a horse!

  7. Revelation,the book of prophecy...21st chapt. verses 3&4 "With that I heard a loud voice from the throne say: "Look the tent of God is with mankind,& he will reside with them, and they will be his peoples.And God himself will be with them" v.4 And he will wipe out every tear from their eyes,and death will be no more,neither will mourning nor outcry nor pain be anymore. The former things have passed away."
    Being a mother also, i have no doubt where your pain lies most & there surely can be no better comfort than those found in God's word for a better future for all of us. Of course he did not inherit from you, but from his imperfect first parents, Adam & Eve. I lost my only son in 2008 to heart disease.He was only 38.

  8. Hello beautiful! So wonderful to have a face to place with your words, your gorgeous creations and your love of life. You're such an inspiration Mary! One of the most challenging parts of your situation is being your own advocate. My sister has MCS--multiple chemical sensitivity. Like histiocytosis, MCS is not a mainstream disease and Amy has been her own advocate forever. The trick is that MCS botches cognitive function AND isolates the person, literally. Amy must be very careful about exposures to "normal" things in life--like grocery shopping, going to a movie, going to a restaurant or a friend's house for dinner. Any of those could be disastrous for her. Her advocacy for herself and others with MCS has been tireless, full of wonderfully warped humor, passion and compassion. You two remind me of each other in the beauty of your Selves, in your commitment to your Journey, in your joy in life. I feel so blessed to know you, soul sister! And thank you for bringing awareness and focus to histiocytosis. Through awareness and education, there is hope for action. XOXOXO Friday.

  9. One forgets that you have had more than your share of troubles because of your positive sway on life. Keep up the good fight!