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Birthday Wishes from Mom & Dad
What a gorgeous day to celebrate the beauty of you, Sarah Kate. Happy Birthday sweet girl. You have blessed our lives so very richly with your joyful, quirky personality. What a privileged it has been to share the past 22 years of wonderful memories. I hope that you enjoy the walk down memory lane ... I know I sure did as I pulled these pictures together. Love you forever and always!!
Birthday Wishes from Krista
Happy birthday to my sweet sister, Sarah! I am so blessed to have such a wonderful sister! Every day, your beautiful personality and optimism inspire me, and I thank God for giving me you. I'm praying that 22 brings a year of answers and continued hope for a healthy future. I love you so much!
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Tag Archives: HLH
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.
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.
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.
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
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
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