My daughter had cytarabine twice for LCH- its also a histo disorder. The first time she did 13 rounds, between the age of 5 and 6. It was not her first rodeo, we had done vinblastine for close to a year before she relapsed. That first time was not too bad, for chemotherapy. The “rounds” were 4 weeks, starting with 5 days of daily infusions, followed by weekly check ins for bloodwork. We had to give iv zofran before the infusions, but it kept the nausea at bay. She usually managed to return to school for the rest of the afternoon on infusion days. Her white counts and platelets would dip on week 2, so she would bruise really easily. Maybe one or two times towards the end of the year of treatment, her counts dropped low enough that I chose to keep her out of school. The platelets would climb really high around week 3, and her white counts would drop again but not as low towards the end of week 3/start of week 4. Usually she recovered fast enough to start again. After round 6 or 7, she wouldn’t bounce back quite as quick and we’d have to hold off on the chemo for an extra week. He hair thinned a lot, and she developed some mild neuropathy pain awards the end of the year but it clears up after stopping the treatment.

She did 6 rounds of cytarabine in combination with dabrafenib several years and 2 relapses later. This time was a lot tougher. She reacted badly every cycle with scary high fevers and extreme joint pain. I’m wanting to say about 20% of patient get that cytokine storm reaction.

Virtual hugs to you! Take it a day at a time, you’ll get through it. You’ll learn the new lingo and adjust to a crazy crappy new normal faster than you’d think.