Category Archives: HLH

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Never Say Goodbye – A Thank You to Dr. Bob Arceci

I’m not so good at saying goodbye. Once you wiggle your way into my heart, I want to hold you there for keeps.

But these past few weeks I’ve been faced with a heartbreaking question: How could I ever say goodbye to the man who saved my life?

Our story begins in June 2011, when my parents and I found ourselves in Baltimore. It had been a tough year for me, with one of the biggest blows being severe and enigmatic hematologic complications that nobody could explain. With this addition to my lengthy list of eccentricities, I had all the earmarks of an underdog. And soon enough I was beginning to think that nobody wanted to deal with an underdog. The major medical center in my area turned me away, saying I didn’t have leukemia or lymphoma, so they couldn’t help me. So there we were, sitting in the pediatric hematology/oncology clinic at Johns-Hopkins, on what felt like our zillionth-and-second medical trip. We were in for quite a surprise… This visit would be entirely unlike the zillion-and-one before.

Posted in Awareness, genetics, HLH, Reflections | Tagged , , , , , | 6 Comments
Do-Re-Mi-Fa-Sol-La-Ti

Last time you heard from me, I was off to the hospital for an MRI. Since my last big HLH flare, I’ve been having very serious hypoglycemia. While I was inpatient this past December, we were surprised to discover that my cortisol was at a critically low level. I practically begged the doctors to allow me to return home to my beloved Christmas tree, but it was simply too dangerous for me to be anywhere but the hospital until this had stabilized with treatment. In the meantime I was well taken care of — I had my darling Doodle service dog Alice Eloise, and one of my favorite nurses, Erin. What I didn’t have was a hairbrush. But did it really matter? My puppy and my nurse certainly didn’t mind my wild hair! Especially in the hospital, a little bit of kindness goes a long, long way.

Posted in HLH, paralysis, Prayer Request, surgery, Uncategorized | 21 Comments
Homeward Bound

I know that many are concerned about Sarah Kate so I wanted to provide an update. Her numbers are trending in the right direction… Enough so that the hope is that she will be able to go home today. Sarah received more blood yesterday, and her fevers are now low-grade. She is feeling totally lousy; but as long as she is stable, home is the best place for her to be.

Posted in HLH, inpatient, Reflections | 7 Comments
We Have an Answer…

Sarah Kate’s labs have confirmed that she is in an HLH (Hemophagocytic Lymphohistiocytosis) flare. She has had constant fevers since Saturday (some in excess of 105); so that, along with dropping blood counts and outrageously high inflammation markers, has left her feeling terribly sick.

Posted in HLH, inpatient, Prayers, please! | Tagged | 22 Comments
Guess Who’s Back!- A Journal Post

Goodness gracious… Where to begin, where to begin? Well, for starters, it’s me… Yes, me, Sarah Kate! My mama did a fantastic job giving you an update when I was unavoidably detained thanks to the complications of my recent central line … Continue reading

Posted in HLH, Journal, Pain, paralysis, RSD | Tagged , , , , , , , , | 20 Comments
Hemophagocytic Lymphohistiocytosis (HLH)

STORIES OF (H)OPE, (L)EGACY, AND (H)EROES Alright, friends. Today I am writing an important post, focusing on a subject that I view with great passion. I have been sick for nearly ten years, facing rare diseases that in many ways … Continue reading

Posted in Awareness, HLH, Patient Stories | Tagged , , | 13 Comments