From Crisis to Comfort: Maya’s First Day Out of ICU Saturday 15th Nov 2025

Relief.

That’s the only word we felt when Maya was officially handed over from ICU to the Lion Ward today.

We’d been bracing ourselves for this moment all morning. The big worry, of course, was that once she left ICU, the level of care would drop from that intense, minute-by-minute monitoring we’d gotten used to. But to our surprise—and honestly, our huge relief—Maya was allocated her own dedicated nurse for the whole day. One-to-one. No looking after three other children, no divided attention. Just Maya.

And I can’t even explain the weight that lifted off our chests, phew!!!

Because the truth is… the life-and-death scenario is finally over.

Our girl no longer needs oxygen.

Her numbers are all sitting in the normal range.

For the first time in days, we could exhale.

She’s still on a cocktail of medications—maximum-dose Methylpred once a day, Keppra twice a day, Meropenem, Fluconazole, Aciclovir, continuous Anakinra to calm that IL1 storm (Interleukin 1), plus potassium top-ups—but the crisis part is behind us. Now we’re in the healing phase.

And healing, for us, means rolling up our sleeves.

I’ve set a two-hourly alarm on my phone so I can give each of her limbs a 10-minute massage and gentle physio. I’m determined that when Maya wakes properly and is ready to move again, she won’t have completely lost the strength to do it. I ask the nurse to help me reposition her regularly—left, right, back—so we can take pressure off her little bony bits and avoid any pressure sores. It’s a full-time job.

But it’s our full-time job.

We are grateful. Deeply grateful.

Maya came out of ICU safe—maybe not fully “sound” yet, but absolutely heading in the right direction. And right now, that direction is everything.

We’ve got no idea yet what the CAR-T cells have done to the neuroblastoma. That answer will come in the first week of December with her bone marrow biopsy, MRI, and MIBG.

That week will be huge.

But for now?

For now we sit with hope.

We sit with relief.

We sit with the quiet belief that healing has officially begun.

Our girl is still fighting.

And today, she got one step closer back to us.

*Note:

Anakinra

What it blocks: IL-1

Used for: ICANS (neurotoxicity), cytokine symptoms that haven’t fully settled, or to prevent the inflammation from flaring back up.

Why it’s preferred for the brain:

• IL-1 is a major driver of brain inflammation in ICANS.

• Anakinra can cross into the fluid surrounding the brain, making it far more effective for neurological symptoms.

• It reduces swelling, helps protect brain cells, and calms the inflammation without stopping the CAR T-cells from hunting cancer.

We are so deeply grateful to everyone who has messaged, shared Maya’s story, or donated. Your love, support, and generosity lift us every single day and remind us we’re not alone on this journey. Thank you from the bottom of our hearts. 🙏