ICANS and HLH after CAR-T Cell Therapy: Long Fight Continues

20/12/2025: Saturdays on the ward feel different. There are fewer people around, the corridors are quieter, and the day seems to move more slowly. It’s one of those days where not much appears to happen on the outside, but inside, there’s still so much going on — for Maya.

It has now been several weeks since Maya’s CAR-T cell infusion on 4th November. Then came the storm: her first ICU admission on 11th November, followed by a second on 18th November, before we finally settled onto Lion Ward on 25th November, where we have been ever since.

ICANS and HLH are not conditions you can see neatly on a scan or measure easily with numbers. They are inflammatory fires — the immune system so activated that it turns its power inward, affecting the brain and body. HLH stands for Haemophagocytic Lymphohistiocytosis.

It’s a rare, life-threatening immune disorder where the immune system goes into overdrive, causing widespread inflammation and damage to organs, including the brain. ICANS (Immune Effector Cell–Associated Neurotoxicity Syndrome), in particular, steals things quietly: speech, movement, facial expression. It leaves a child who is still there, but trapped behind swelling and disrupted signals.

Today, Maya doesn’t speak. She doesn’t walk. Her face doesn’t show expression the way it used to. And that absence can be terrifying.

But Maya is not gone.

She rolls her tongue, clearly trying to say something. She laughs and giggles at moments that feel right — at voices she recognises, at something familiar or funny. Those giggles are not reflexes. They are Maya. They tell me her awareness is there. Her emotions are there. Her intention is there.

Amanda came to see Maya briefly on Friday and again on Saturday for a wee bit longer visit. Seeing someone familiar in the middle of all the waiting and uncertainty means more than it probably looks from the outside.

I’ve learned that with ICANS, recovery doesn’t arrive in a dramatic moment. It comes very slowly. First intention, then movement. First sound, then words. Facial expression can be one of the last things to return. The brain is inflamed, not broken — and children’s brains are astonishingly capable of healing, rewiring, and finding new pathways when given time.

There are no promises in this space. No one can hand us a date or guarantee an outcome. But there is something else: reasonable, evidence-based hope. Children who show purposeful responses — who laugh, who try to speak, who connect — often continue to recover over months, not days. Progress can be uneven and painfully slow, but it can continue long after the worst has passed.

Alongside this long neurological wait is another stubborn HOPE — that while ICANS and HLH were raging, the CAR-T cells were doing their job. CAR-T is powerful, powerful enough to cause this level of immune reaction, and that same power is what we hope has been directed at the neuroblastoma cells. We won’t know the full picture yet. Scans and results take time. But the strength of her immune response leaves space to believe the CAR-T cells recognised their target and went to work.

Christmas and Boxing Day will be spent here on Lion Ward, just the three of us — me, Terry and Maya. The children are given a Christmas meal, although Maya won’t be eating yet as swallowing is still very difficult. Parents are offered sandwich lunch boxes, so Terry is planning to bring in proper Christmas dinner for us both, cooked at home — a small piece of normal in an abnormal place.

The photos show how the a small amount of strawberry ice cream stayed in Maya’s mouth as her chewing mechanism isn’t fully back in action yet.

I’m very aware that Christmas stretches everyone financially, so there is absolutely no expectation. But there a few number of people who have kindly asked how they can support us. With ongoing weekly train fares and being away from home over Christmas, any donations — however small — would help us manage the practical costs of being here, including putting together a simple Christmas dinner. Thank you so much.

PayPal to dellanie_nash@yahoo.co.uk (as a gift)

Santander

D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

So today is about holding two truths at once.

Maya is still very unwell.

And Maya is still here.

Healing right now doesn’t look like walking or talking. It looks like giggles. Like intention. Like small signs that her brain is finding its way back through the fog. It looks like patience — the hardest medicine of all.

Saturday passes quietly. We wait. We watch. We hope. And we trust that beneath the silence and the stillness, her body and brain are working in ways we cannot yet see.

One step. One signal. One day at a time.