Breathe, Maya. Just Breathe

Breathe, Maya… Breathe.

That’s what I whispered through the night — over and over — as Maya began breath-holding for 10–20 seconds at a time. I had to tap her shoulder, squeeze her hand, gently call her back each time her brain “forgot” to breathe. Neither of us slept. I held her hands all night, sang to her her favourite karaoke tunes “Country Roads, Take Me Home”,

“Daydream Believer”, “Three Little Birds”, “Lean On Me” on repeat. And every time she drifted off… she’d pause again. I can’t ever describe the fear of watching your child slip into silence and having to remind her how to live.

The CSP/ICU Team and doctor-on-call came urgently, and a 1am X-ray thankfully showed clear lungs.

But the problem isn’t the lungs — it’s the inflammation deep in the brain from the “cytokine storm”.

Two nights ago her body temperature crashed because her hypothalamus stopped regulating heat. Since then she’s been wrapped in a Bair Hugger blanket just to stay warm. It’s as if her brain is shutting down certain functions to protect itself from further damage.

A CT brain scan this morning was stable. A win.

Her echocardiogram showed her acute heart failure has improved so much. Another win.

But then, as she arrived in ICU, she suddenly had an explosive nosebleed that wouldn’t stop — a full horror-scene burst. She needed immediate platelets transfusion.

Maya is now intubated and sedated — not paralysed — and still breathing on her own, but the ventilator takes over when her brain “forgets” to.

Tonight, she was given IV cyclophosphamide. I know it sounds strange — this chemo is normally before CAR-T, not after. During the first week of admission, Maya was given IV cyclophosphamide (lymphodepletion) to make room in her bone marrow for the new Car T cells.

But in rare cases like Maya’s, when the CAR-T cells won’t stop causing “cytokines storm” and the brain inflammation becomes life-threatening, doctors have to use “rescue cyclophosphamide” to shut down the overactivated immune cells.

This isn’t cancer treatment.

This is to save Maya’s brain.

To stop the inflammation that nothing else — steroids, anakinra, Tocilizumab, Situximab, Rituximab, Ruxolitinib, all the other rescue meds — has been able to calm.

These last weeks have been very brutal… but last night, begging Maya’s body to breathe, was a new kind of terror!

Thank you all — truly — for your kindness, your messages, and your love for Maya.

I will try to reply to everyone, but I hope this update helps.

Every minute now, we’re praying for a miracle.

I also want to mention the CSP team (Clinical Site Practitioners) at GOSH, because they play such a vital role in keeping Maya safe on Lion Ward. I’ve been told to keep a very low threshold for worry, so every tiny change I notice — a sound, a shift in her breathing, a rise in her heart rate — I alert the nurse immediately, and the CSP team comes straight away.

They are the hospital’s rapid-response specialists, checking Maya closely, spotting early signs of deterioration, and intervening fast to keep her stable and hopefully prevent another ICU admission. They work closely with ICU, oncology, neurology and cardiology, and can escalate her care within minutes if needed.

Their presence gives us so much reassurance in this terrifying time. We are incredibly grateful for their vigilance, compassion, and the way they care for Maya as if she were their own.