A Vicious Cycle - CRS- Cytokines Release Syndrome

dellanienash9
Nov 8
4 min read

The last four days have felt like a never-ending tug of war inside Maya’s little body. We’ve been caught in what I can only describe as a vicious cycle — one step forward, two steps back.

As a side effect of Car T Cell Therapy, Maya’s blood pressure has been stubbornly low, and her potassium and magnesium levels have been dipping too. The doctors have been doing everything they can to stabilise her — carefully giving her IV fluids to plump up her blood vessels and help raise her blood pressure.

But in the process, those much-needed fluids have started to wander into places they shouldn’t — seeping into the tissues and spaces between her cells. Her eyes and face have become puffy, her ankles a little swollen, and now, there’s fluid collecting where we least want it: in her lungs.

To ease off that overload, the team prescribed Furosemide, a diuretic that makes her wee a lot — helping her body release the excess fluid and, in turn, easing the pressure on her lungs. It’s doing its job, but it also comes with a price: as the fluid comes out, so does some of her blood pressure and vital electrolytes — potassium and magnesium — the very things she needs to keep her heart and body stable.

It’s a delicate balance the doctors are trying to maintain — giving enough fluids to keep her blood pressure steady, but not so much that they flood her body again. It’s like walking a medical tightrope, and every adjustment feels crucial.

Because the Furosemide keeps her weeing every couple of hours — sometimes every half hour — neither of us has managed any real sleep, day or night. Nurses, student nurses, HCAs, ICU clinical nurse practitioners, and even doctors are constantly coming in to check her blood pressure, oxygen saturation, respiration rate, and her 24-hour ECG trace. All these checks are vital while Maya is going through Cytokine Release Syndrome (CRS) — one of the known side effects of CAR T cell therapy — as the team closely monitors her to make sure she doesn’t deteriorate and need to be transferred to ICU.

Despite all these efforts, it’s proving to be such a difficult time for Maya.

She’s lost her appetite completely, and eating has become almost impossible.
Her physical activity is now limited to slowly getting to and from the toilet.
She’s so breathless — panting like a tired little dog — that she can’t stay upright long enough to help push the fluid out of her lungs.

I’m doing my best to feed her tiny spoonfuls of food and offer sips of fluid whenever she can manage, but she turns away most of the time, saying it makes her feel sick.

Maya’s on a long list of regular medications:

💧 IV anti-sickness to ease her nausea

💧 IV anti-histamines

💧 IV Furosemide (the diuretic)

💧 IV antibiotics (because she’s been having temperature spikes)

💧 IV Paracetamol

💧 Oral Potassium (which she absolutely loathes — it has such a vile taste!)

💧 Oral Magnesium (they prescribed chewable tablets, but those don’t taste nice either)

She’s constantly whimpering, shivering, aching — experiencing all the flu-like symptoms that come with CRS. And the trouble with Maya is… when we were told about the mild, moderate, and severe side effects of CAR T cell therapy — Maya, of course, had to go for the severe ones.

I am due to swap with my husband tomorrow (Sunday 9th November) as I have an MRI scan appointment for my right shoulder at the William Harvey Hospital around 4pm. Suspected rotator cuff syndrome (I guess “wear and tear” of perimenopausal women like me!). And I am working on Monday 10th November until

1pm. It will be good to see Lola again, and listen to her play some tunes on the piano/guitar, and to see Honey (our Fox Red Lab), Timmy and Mochi (cat and kitten)! Monday night I shall be back here at GOSH!

If you feel like you can help with train fares or hospital foods (the hospital only feed the child patient), please kindly donate via PayPal as a “gift” to dellanie_nash@yahoo.co.uk

Or via bank transfer

Mrs D C Nash

Santander

Sort code 09-01-36

Account number 49579984

Through all this, I sit beside her — tired, sleepless, and worried — but holding onto every small sign of strength she shows. Even when she’s at her weakest, she still squeezes my hand and looks at me with those big eyes that seem to say, “Mum, I’m trying. Please help me.”

And she really is.

This has been one of the hardest stretches so far, but I keep reminding myself that every drip, every beep, and every sleepless night is part of the fight — part of her healing.

If you feel inspired by Maya’s story, please share it to everyone you know. Her resilience, her strength is nothing short of extraordinary.