When Maya’s Brain Became Inflamed — ICANS After CAR-T Cell Therapy

Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS)

Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS, a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma.

Because of this inflammation, Maya has been experiencing:

• confusion

• struggling to speak

• tremors

• agitation

• seizure-like jerky movements

• and very long periods of reduced consciousness

  
  

Watching Maya like this has been the most painful thing we’ve ever gone through as parents. Our little girl, who was laughing, talking and singing only a week ago, is now fighting silently through something no child should ever face.

Maya is currently in ICU, surrounded by machines and wires, and receiving:

• maximum-dose steroids (Dexamethasone initially, now changed to MethylPrednisolone)

• continuous Anakinra

• Tocilizumab (several doses) and Siltuximab (one-off)

• Rituximab (one-off to “switch-off” the Car T cells

• antiviral and antifungal protection

• IV fluids and potassium

• seizure prevention (Keppra or Levetiracetam)

• round-the-clock monitoring

Maya is on the highest level of care, with every treatment available to calm the inflammation in her brain and stabilise her body.

And although this stage is terrifying, we are holding onto the hope that Maya will recover from severe ICANS.

She will eventually wake up slowly.

She will start responding.

She will begin to speak again.

She will regain movement and strength.

We had been warned that recovery is not instant — it often takes several weeks, sometimes months — but her medical team is doing everything possible to bring her back to us, step by step.

We cling to hope every second.

How We Will Know She’s Getting Better ❤️‍🩹

The first signs hopefully will come:

• opening her eyes more

• following a simple command

• trying to squeeze our hand

• turning toward our voices

• a small change in her expression

  
  

Later on will come:

• attempts to speak

• sitting up

• standing with support

• little steps

• full walking and talking again

  
  

These are the milestones we pray for every hour.

As Her Parents

Neither of us had been able to work during this time to stay by her side all day — and one of us must be at the hospital every single second to advocate for her, speak for her, and hold her hand, whilst the other parent hold the fort at home.

The world keeps turning outside these hospital walls — but ours has paused.

Yet the bills do not pause.

We are doing everything we can, but our mortgage and essential utilities are becoming overwhelming while we fight for Maya’s life.

This is the hardest thing we’ve ever had to admit.

🌈 If You Feel Able to Help

If any family or friends wish to support us with:

• our mortgage

• gas/electric

• water

• and keeping our home stable for when Maya returns

  To those who asked how to help:

  PayPal: dellanie_nash@yahoo.co.uk (send as gift)

  
  

  Santander – Mrs D C Nash

  09-01-36 • 49579984 • Ref: Maya’s Journey

…it would take an enormous weight off our shoulders during the darkest and most fragile time of our lives.

Even the smallest support helps.

Even sharing our story helps.

Even a message of love helps.

Your kindness is carrying us through a place we never imagined we’d be.

Thank You

From the very bottom of our hearts, thank you to everyone who has stood beside us — for praying for Maya, for sending messages, for donating, for sharing, for giving us the strength to keep going when our fear feels unbearable.

Please continue to keep Maya in your prayers, in your thoughts, and in your hearts.

We believe she will find her way back to us.

One tiny step at a time.

And we will keep fighting for her, every second, until she does.