Table 6 Long-term concerns following treatment

Anxiety

“Every time she has a sickness, in the back of my head somewhere, HLH is there”

Compromised immune system

‘‘Cause if he got a cold, he’d get it 100 times worse, you know, ‘cause they do, ‘cause their immune system’s not great … [3^rd child], I remember he got chickenpox, [child with HLH] caught it. That made him go into hospital, ‘cause they got infected”

Prolonged viral infection and hospitalization

“…about a year past, two years past tran [transplant]—she ended up back in the hospital and we were like—just when you’re like, you know, you breathe a little bit and we’re like, oh, how can this happen two years later?”

Other issues

“…the chemotherapy had killed his thyroid in his neck. I guess, you have a thyroid in your brain as well, but it totally wiped it out. So, he’s on thyroid medication every day…”

Focus on the positives

“So, she is amazing now. So, I mean, she—the more years you put under your belt, the more you relax. So, we didn’t really relax probably—I’d probably say four years, four or five years … She’s now almost off all her meds [medications], it was three years out and she went back to school full-time and, you know, life, sort of, gets back to normal”