Our Brave Girl Is Fighting Hard Tonight – Please Keep Maya in Your Prayers
- dellanienash9
- Nov 11
- 3 min read
🩷 Maya Update – Monday, 10th November 💜
After one Sunday night of sleeping at home following my MRI yesterday (Sunday 9th Nov), I’m now back at Great Ormond Street Hospital (GOSH). Maya is very poorly, so I’m staying overnight with her again.
My husband Terry isn’t coping well. He’s emotionally exhausted after a long, difficult Sunday night on his own with Maya. He’s currently staying overnight nearby at the Family Accommodation (Sick Children’s Trust), just five minutes walk from the hospital, to get a bit of rest tonight.
Since I left yesterday (Sunday afternoon), Maya has deteriorated significantly due to severe inflammation — one of the serious side effects of CAR-T cell therapy.
🩸 What’s been happening
Tuesday 4th November – Maya received her CAR-T cell infusion: 396 million cells (a very high dose). She had already completed low-dose chemotherapy (Fludarabine and Cyclophosphamide) the week before, from 27th October, to prepare her body by making room in her bone marrow (lympho-depletion).
CAR-T cells are genetically modified immune cells designed to recognise GD2, a molecule found on neuroblastoma cells. The hope is that these engineered cells will seek out and destroy the neuroblastoma cells cancer.
Unfortunately, Maya’s body has been increasingly reacting severely. Her immune system recognises the CAR-T cells as “foreign” and has gone into overdrive, causing what’s called Cytokine Release Syndrome (CRS) — a storm of inflammation.
⚠️ Symptoms and treatment
Severe inflammation and fluid leakage – the fluids that should stay in her blood vessels are leaking into tissues and spaces we don’t want them to be. Maya’s face, eyes, and legs are swollen, and doctors are concerned that some fluid may also have gone to her brain.
Low blood pressure – due to fluid imbalance.
Loss of mobility – she can no longer use her legs.
Delirium and confusion – she’s been drifting in and out, talking to our cat Timmy, our kitten Mochi, and our dog Honey, as if our fur babies (pets) are in the same room as her, and then suddenly asking, “Why is Daddy upset?” before slipping away again.
Possible neurotoxicity – we are watching closely for seizures or worsening neurological symptoms.
Maya had an urgent MRI this afternoon, and depending on the results, she may also have a CT scan of her brain.
💊 Medications and care
Maya is on a long list of medications to help control inflammation, fight infection, and support her body through this reaction:
💧 IV anti-sickness
💧 IV antihistamines
💧 IV antibiotics (for temperature spikes)
💧 IV paracetamol (pain and temperature)
💧 IV furosemide (diuretic) – to remove excess fluid
💧 Oral potassium (which she hates — it tastes awful)
💧 Oral magnesium (chewables, but not much better!)
💧 Oral aciclovir and allopurinol as part of her CAR-T regime
Her obs (observations) are taken every half-hour — blood pressure, temperature, respiration rate, oxygen levels, and close monitoring of fluid balance (input and output). At the moment, she is in fluid positive and has gained more than a kilogram weight despite not eating properly for the last one week.
💔 The hardest part
Giving her furosemide at night means she needs the toilet every half hour. Terry was lifting her each time — with her legs not working — while dragging the IV stands beside her. Between that and nurses coming in for obs, Maya and Daddy barely slept all night.
After seven nights of almost no rest, Maya’s body finally gave in to the exhaustion, inflammation, constant medication. She became delirious, her speech slurred, and her little body just couldn’t fight any harder today.
It broke Terry. For a man who’s 6’3”, strong and broad, he’s been in tears — completely devastated watching his daughter fade in and out, and unable to do anything.
When Maya asked me, “Why is Daddy upset?” I told her, “Because Daddy is worried about you.”
She said softly, “I don’t want Daddy to be worried about me.”
And then she slipped away again, her eyes rolling upward, lost in confusion.
Tonight…into the wee hours of Tuesday 11th November:
I’ve sent Terry to the family accommodation to get some sleep. I promised him I won’t sleep until he’s back in the morning. I need to stay strong — for Maya, and for him.
I had to sugarcoat things when I spoke to Lola, Enzo, Leon and Jerome so they wouldn’t worry too much. But inside, I am crumbling. 💔💔💔
Please keep Maya in your thoughts and prayers tonight.
She’s fighting so, so hard — and we’re holding on with everything we have.
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