💥 War Zone Inside Maya’s Body

It’s hard to describe what the last few days have been like. I’m here on my own in Lion Ward, cubicle 5, watching my brave girl Maya fight through something that feels like a war raging inside her tiny body.

On Tuesday 4th November, Maya received her CAR-T cell therapy — those precious cells we’ve been hoping and waiting for. It only took six minutes for the infusion to go in, but what’s happened since has been nothing short of a battle.

Since Tuesday night, Maya has been fighting high fevers, uncontrollable shivers, and dangerously low blood pressure and low potassium levels. Her body is reacting to the new CAR-T cells, thinking they’re foreign invaders, while the CAR-T cells themselves are doing their job — finding and attacking the neuroblastoma cells. It’s like a war zone inside her body, and she’s caught right in the middle. 💔

We barely slept. Every hour brought new worries — the beeping IV machines, the rapid heart rate that climbed as high as 162 beats per minute, her breathing so fast it reached 43 breaths per minute, using every rib muscle just to get air in. Her oxygen levels dropped to 89%, so she now needs oxygen, though she fights the oxygen mask and oxygen cannula every time.

The ICU clinical practitioner comes to assess her three times a day, keeping a close eye as things change hour by hour. Her chest X-ray showed “hilar changes” which can be concerns for suspected pneumonia, and she’s been coughing — painful, irritating, and exhausting for her.

Some of the IV fluids meant to help raise her blood pressure started leaking into her tissues instead of staying in her blood vessels — leaving her with a puffy face, swollen feet, and fluid in her lungs. It’s called “leaky vessels,” a result of all the inflammation from the cytokine storm. To help, they’ve given her diuretics today (Furosemide low dose) to offload the extra fluid, but that comes with its own risks — lowering her blood pressure (which was the problem at the outset) and dropping her potassium levels (also issues the doctors are contending with).

Her potassium was already dangerously low, so the team added it to her IV fluids, carefully balancing every drop going in and out of her body.

Since yesterday (Wednesday evening 5th November), the consultant decided to give two doses of Tocilizumab — a monoclonal antibody that helps dampen the “cytokine showers”, the overwhelming inflammatory reaction that’s been making Maya so unwell. It’s helped a little, taking the edge off the storm, but she’s still feeling flat, exhausted, and “out of it.”

It’s been six nights of little to no sleep for either of us. I sit by her bedside, listening to the monitors and watching every breath she takes. There are moments of calm, then waves of worry. But through it all, Maya keeps fighting. My warrior girl doesn’t give up.

We are so grateful to everyone who’s supported us — especially those who donated towards train fares and hospital food.

Your kindness keeps us going. And thank you to Grandad Mike for visiting today and bringing homemade food — it brought a little comfort in the middle of this chaos.

Right now, Maya’s body is still in battle mode — CAR-T cells versus cancer cells — and we’re holding on with everything we have. Please keep Maya in your thoughts and prayers. She needs all the love and light you can send her way. 🌈

— A mother, from Lion Ward cubicle 5, watching her warrior fight through the storm.