When 20 Seconds Feels Like a Lifetime

Maya has been having repeated breath-holding episodes tonight — sometimes up to 20 seconds — with her oxygen dropping to 84%. I alerted the nurse straight away and the CSP came to assess her.

They’ve done another chest X-ray (I’ve honestly lost count now… the 5th? Or ?6th since she was admitted on 28 October).

We don’t know what’s causing this:

– Sleep apnoea?

– Melatonin?

– Oral morphine?

– ICANS?

Yes, ICANS can potentially affect breathing in severe cases. ICANS is a neurotoxicity caused by CAR-T therapy, leading to brain inflammation. When the brain is inflamed, it can disrupt normal control of involuntary functions, including respiration, though breath-holding isn’t the most common presentation.

We’re not exactly sure what’s causing it — it could be her ICANS affecting her brain, medications, or sleep-related breathing issues. It’s probably a mix of all three.

All I wanted tonight was to catch a few minutes of sleep after barely getting two hours last night… but everything keeps spiralling. I’m so tired, but Maya keeps needing me.

It’s so hard, and I feel like I’m running on empty.

#kidsgetcancertoo #mumcology #sleepapnoea