Not ICU Enough… But Nowhere Near Safe
- dellanienash9
- Nov 27
- 3 min read
Tuesday 25th November has been another REALLY heavy day for Maya. Her post-ICU instability is showing again, and it honestly feels like we’re walking on eggshells with every breath she takes. Her desaturations today proved just how fragile she still is. During the weekdays, Maya will have had visits from the Research Oncology Team, the Ward Doctor Team, CSP (Clinical Site Practitioner), ICU Team, Physio/OT, Play Therapists, Pet Therapy, Music Therapy, Hospital School, and then her nurse and HCA or student that’s constantly giving Maya bedside care. Not ICU enough, but stability isn’t stable either.
Around 4pm, just when it felt like she was finally settling, her heart rate suddenly shot up to 142 (she usually sits around 90–100). She started crying out in pain, and as the nurses and I turned her, she passed a very dark, runny, sticky stool — like phlegm. Nothing like her usual. Is it melaena?My stomach dropped. I’m scared it could be bleeding or an infection.
Maya struggled with breathing through the cleaning, pad change, nebuliser and extra oxygen, but once we repositioned her with the slide sheet, she finally settled. Her heart rate dropped and the whingeing eased, but that couple of hours felt unbearably long. The worry of ICU re-admission always sits just under my ribs.
She slept from about 5pm…
but by 10:45pm it all began again!
More secretions, another spike in her heart rate, groaning sounds (is she in pain?), another nebuliser, more suctioning. Until her cough reflex returns, she needs others to do her breathing clearance for her — and that reality is terrifying!
There were a few bright moments though.
The lovely Nanny Dora (paternal grandmother) and Maya’s wonderful teacher, Sue, came by today. Sue read Maya her favourite stories, and Nanny massaged her legs, moisturised her skin, and later on, we all sang “Country Roads, Take Me Home.” Small precious moments, but they meant everything.
Because of Nanny Dora and Sue’s visit today, I managed to step outside of the hospital for a little bit — I swam for an hour in the pool (Nuffield Health Bloomsbury) and sat in the steam room just to reset my mind. In that moment, I finally had a brief sense of calm — just enough to catch up with myself and my feelings.
If any of you are finding things hard, please try to seek out even the tiniest pocket of peace amid the hurt. It can help more than you think.
Inside this hospital, life feels paused — like time has stopped.
Outside, life continues as if nothing is happening… as if my daughter’s world isn’t hanging by a thread.
To everyone who has messaged privately, shared Maya’s story, showered our other daughter Lola with love, and supported the fundraising — thank you. Truly. Your support helps ease the financial pressure that comes with childhood cancer, and it allows us to focus on Maya without drowning in the weight of everything else.
I know my updates have been less frequent — Maya’s care right now is intense and constant — but please know: we read every single message.
And I appreciate every single one of you.
To those that have asked:
PayPal to dellanie_nash@yahoo.co.uk (as a gift)
Santander
D C Nash
Sort code 09-01-36
Account 4957 9984
Reference: Maya’s Journey
We are truly grateful for the donations and for helping share Maya’s story. If we haven’t fully expressed our thanks, it’s because things are so overwhelming here at the hospital. Your support means everything to our family, and your kindness does not go unnoticed. Thank you from the bottom of our hearts.
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