Tag 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
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
We Are Not Invisible!

National Chronic Invisible Illness Awareness Week was observed earlier this month. Over the years my illness has become more obvious to a casual observer, but from the early days of my chronic battle I poignantly remember the challenges posed by the mere fact that my illness was largely invisible. And because of those painful memories, I feel compelled to speak up for myself, for my friends, and for the many silent sufferers of invisible illness.

My very first diagnosis in my journey was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), a chronic neurological pain condition. At age 13 I still looked like the same happy, peppy, sassy Sarah Kate in my darling little Abercrombie skirt; but on the inside, I was fighting to deal with this new sensation of an ever-present burning flame that threatened to bring me to tears if only I would give into it.

Posted in Awareness, My Story, Reflections | Tagged , , , , , , , , , | 9 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
A Brief Update, and so Much Love for my Family and Friends!

Hi friends! Not too much is happening around here this evening. And weekends at the hospital are notoriously slow, but that’s okay, because I really need some rest! I was finally moved up to a room on the floor around … Continue reading

Posted in HLH, Pain, Prayers, please! | Tagged , , , , , , | 8 Comments
Prayers, Please!

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.” … Continue reading

Posted in HLH, Pain, Prayers, please! | Tagged , , , , , | 26 Comments