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Brave Warrior Maya Is Not Giving Up

Maya Update – 20 November 2025


I’ve added stickers over Maya’s face to soften the photos as I know how hard they can be to see — but I also want to keep everyone updated as clearly as possible.


🫁 Scans & Tests


  • Chest X-ray (18/11): Clear.

  • CT scan (18/11): No swelling, but some new changes they’re watching closely.

  • MRI brain & spine (with contrast 19/11): Again, no swelling, but new changes similar to the CT.

  • EMG/Nerve conduction studies (19/11): Inconclusive because she was deeply sedated. They may repeat it unless she starts moving her legs herself. At the moment, there’s still no movement in her legs, but she continues to move her arms.

  • EEG (today – her 4th one 20/11): Report pending.

  • Lumbar puncture 20/11): She’s had her second one today under Propofol/Ketamine.


🫁 Breathing & Neurology

Maya is still intubated. They’ve started slowly weaning her oxygen, but she’s still breathing less than the ventilator is doing for her, which suggests her brainstem and hypothalamus aren’t fully functioning yet.


💉 Treatments & Medications


  • She received Cyclophosphamide to reduce her lymphocytes and hopefully clear the lingering CAR T cells. This drug can irritate the bladder, and she still has blood in her urine, although yesterday’s culture was negative. They send MSU samples for each urine dipstick that shower blood, and she’s protected with Mesna.

  • She’s on continuous Anakinra infusion and hyper-hydration to protect her bladder and kidneys. But also on Furosemide (diuretics) to “dry her” chest and not end up with wet lungs. The aim is to be fluid negative up to 500ml.

  • ICU and Cardiology are being very cautious because last week she became fluid overloaded with “wet lungs,” so they’re balancing her fluids with small doses of Furosemide.

  • She’s also on half-dose Methylprednisolone (steroids), Aciclovir, Amikacin, and additional monoclonal antibodies / immunomodulators (the ones that end in -ab and -ib such as Tocilizumab, Siltuximab, Rituximab, Ruxolitinib.



📍 Lines & Access

Maya currently has:


  • NG tube

  • Arterial line

  • Port

  • PICC line

  • A PVC on her ankle for the continuous Anakinra



💙 How the team is doing 🤍

The whole ICU, Oncology, Cardiology, and Research teams are extremely worried. They are genuinely throwing everything possible at this to bring our girl back. We feel the effort, the intensity, and the love in the room.


💔 For us…

It’s utterly heartbreaking seeing Maya like this.

I need to remain here with her until she is out of the critical phase, however long that takes.


Thank you — truly — for all the love, messages, prayers, and support. If you fancy any of the prizes up for grabs, please put your bids in! And don’t forget to share the ‘Bids for Maya’ auctions to help spread the word. All these (every penny) will keep us going.


We don’t call her Maya, the Neuroblastoma Warrior, for nothing.


And nobody ever became poor by giving — every share, every donation, every prayer helps us fight this battle together.


With love,

Dellanie & Terry 🩷💜



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