Weekend Small Wins and Setbacks: Healing Isn’t Linear
- dellanienash9
- Nov 30
- 4 min read
🗓 Saturday 29th November 2025
Today was a quiet one for Maya. She slept for most of the day, with her leg splints on for two hours and off for two hours, just as physio planned. For a moment, it looked like her thermoregulation was finally improving — she managed to keep her temperature between 36.8–37.1°C without the Bair Hugger blanket. But by night, her nurse recorded 36.1°C, and the warming blanket had to go back on. A reminder that recovery from ICANS isn’t linear.
Her blood pressure behaved through the day, only to dip to 77/46 in the evening. Another sign that her brain is still slowly trying to rewire and regain control. The team reminded me again that ICANS comes in waves. We edge forward, then we hold. We plateau. Sometimes we slip back. It is all part of the brain’s healing pattern.
So much of my day is hands-on care. It’s practically a full-time job:
• A full bed bath every day
• Turning Maya every two-three hours with the nurse/HCA to prevent pressure injuries
•PICC line dressing change (done once weekly) and her NG tube repositioned to her cheek.
• Passive limb exercises and massage to keep her muscles, tendons, and ligaments awake (I do this throughout the day I’m awake)
• Oral care three times a day — brushing her tongue with a sponge, helping stimulate biting and jaw-opening reflexes, all to support her future Speech and Language Therapy (I do this myself. It’s physically and emotionally draining, but it’s also one of the few things I can do for her right now).
• Managing secretions because her swallowing and saliva regulation aren’t quite there yet (nurse or Physio).
Here at GOSH, I quickly learned that physiotherapists do far more than joint and leg exercises — especially in ICU and oncology. They’re also highly skilled in chest physiotherapy, helping clear mucus, improve breathing, and protect the lungs, alongside supporting mobility, strength, positioning, and rehab after neurological challenges like ICANS. Their role is a crucial part of recovery, and we’ve seen firsthand how specialised and multi-skilled the physio team here truly is.
At 5pm, Enzo visited after his work — and honestly, he lit up the room for Maya. While he fussed over Maya, Terry and I slipped out for a quick swim and some street noodles. A tiny pocket of self-care, because the truth is, you cannot pour from an empty cup. Camden and Bloomsbury are full of places to grab a bite, and it felt good to breathe air that wasn’t from a hospital corridor. I truly believe “sibling love” has a healing power of its own. They might squabble like any siblings, but the bond underneath it all is unshakeable.
Terry and Enzo headed home at 8pm last night — Terry to hold the fort, and Enzo with work on Monday and a list of Sunday errands to sort.
Overnight, Maya’s BP, temperature, respirations, neuro observations, pupils, pad changes, and turns will continue to be closely monitored — as they have been every night. Progress sometimes feels slow, and sometimes it looks like we’re going backwards, but the brain is rebuilding pathways the way a city reroutes traffic during major roadworks. When the usual bridge or road is blocked by inflammation, it has to build new temporary detours. That’s exactly what Maya’s brain is doing — rerouting, rebuilding, repairing.
🗓 Sunday 30th November — Quiet Day Ahead
No visitors planned today. Maya’s day nurse said she will speak with the sister-in-charge about me being allowed to step out for a swim. Even though Maya has 1:1 nursing, that nurse can still be called away for urgent tasks, so the team needs to officially note if I’m leaving the building. They’ve reassured me someone will cover her, and the nurses always have their portable computers to monitor everything closely.
A quick note on ICANS and Maya’s mucus issues
*** Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS) ***
ICANS affects the brain and, in Maya’s case, has weakened her swallowing and cough reflexes. This means thick mucus can build up and form mucus plugs, which can block her airway.
She currently needs:
• 3% saline nebuliser every 6 hours
• 0.9% saline nebuliser as needed
These help loosen the mucus so nurses can suction it safely. Maya can’t cough strongly or spit out secretions yet, so this is essential.
When will she be able to speak,
swallow, eat, and drink again?
There’s no exact timeline — it depends entirely on how quickly her neural pathways recover. Once her gag, swallow, and cough reflexes strengthen, Speech and Language Therapy will begin retraining those functions. It could take weeks. It could take months. The range is broad, but every small recovery step brings us closer.
Right now, the estimate for returning to her baseline — walking, talking, eating, drinking, and singing again — is another 2–6 months in hospital. It’s a sharp contrast to the original plan: she was meant to go home on 18th November.
Holding Steady
We remain steadfast, strong, resilient — not because we choose to be, but because we have to be. And through it all, Maya continues to fight with a courage no child should ever have to summon.
Her story deserves to be known, because she truly is extraordinary.
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
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Thank you to everyone who continues to support, donate, and share Maya’s story — your kindness holds us up. I hope these blogs offer a little insight for anyone newly thrown into the oncology world.
Hugs , love healing , strength to little maya abd you all xxzx