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Table 4 Physical well-being of the patient

From: A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Issue highlighted Example quote
Before treatment
Delayed development “I knew something was wrong, but I couldn’t put my hand on it either. I mean, it looked—he was developmentally delayed, but when they would test him, they said, ‘Well, he seems okay,’ ‘cause he’d been tested a couple of times, that’s how concerned I was, but again he kept getting sick. We—you know, his neck would just swell and it all seemed lymphatic and sinus related, you know, and then, he had the club feet, so then he finally got through with those shoes and that was fixed and all, and then he slept a lot. He—and then, you know—so, that failure to thrive really lasted, I would say…”
Physical appearance “…she looked like a scarecrow ‘cause she’d lost so much weight ‘cause she hadn’t been feeling—you know, she’d been sick. She looked, oh, she looked awful. She looked like, you know, a camp survivor, it was terrible…”
Sleep “He slept. He wasn’t fussy, really, per se, he just was very lethargic. He slept. He didn’t want to wake up to eat”
Effects of treatment
Delayed development “I would play with him, but even a, let’s say—I don’t know, you know, from the sitting up stage, he was so weak that he had a hard time even playing with toys because, you know, his fine motor—he didn’t walk until he was almost four … And he actually had trauma to his throat when he was intubated. So, they told us he would never talk, so he did all sign language, but now he does talk … I guess four he started getting a voice back. I would say four was the age that he started eating something by mouth. He learned how to walk, he learned how to talk. I would say up until four he pretty much just, kind of, sat there”
Physical appearance: conventional therapy “So, he was pretty swollen from all the meds [medications] that he was taking. So, like, you know, his cheeks were swollen, and his tummy was swollen”
Physical appearance: HSCT “So, post-transplant … She added 30 lb to her weight and she’s unrecognizable
Sleep: conventional therapy “We are weaning him off, according to protocol … cutting down the steroid to zero. And funnily enough, when we cut them down to zero, he slept for the first time, like, a full night … without the—any interruption, without any nightmares, without anything else and woke up, for the first time after nine weeks, with smile on his face”
  1. HSCT, hematopoietic stem cell transplantation
  2. Note that the words in brackets have been added either to preserve anonymity (following removal of possible identifying information) or for clarity and are not part of the original quote