A Wednesday Measured in Scans, Strength and a Little Bit of Laughter

Wednesday 17th December 2025

We left cubicle 9 at 8:50am to head down to Nuclear Medicine (Level 1) for Maya’s MIBG scan booked at 9am. No anaesthesia. Just Maya, lying flat on her back with both arms up, while a humongous machine slowly worked its way from her feet all the way up to her head — ten minutes of imaging per body part, and another z40 minutes on the torso and bladder, so about three hours in total.

At one point her head was gently turned to the right, as well as the MiBG machine lowered right down to the tip of her nose.

I don’t think anyone truly understands how intimidating that is until you see it. There were groans. Peppa Pig helped at first, but the groaning slowly got louder. I called for a timeout.

When your child can’t talk, you become hyper-vigilant. You scan them from head to toe over and over again. Pain? Discomfort? Too hot? Too cold? My first instinct is always the nappy. Yep — wet. And soiled. We came prepared.

As I was cleaning her, changing her nappy and applying barrier cream to all her vulnerable skin areas, Maya suddenly started peeing. Then we heard it… laughter. No facial expression, just pure belly laughter. Even during ICANS, Maya is still pranking us! So on went another fresh nappy — and she laughed even harder. Her shoulders shaking with giggles, no facial movement at all because her facial nerves still aren’t cooperating. But that laughter? Absolute music to our ears.

As time went on, she’d clearly had enough of lying on her back — and honestly, the surface isn’t exactly comfortable. I put Spotify on and started singing her favourite songs. It was a long stretch. At the end, there was a quick CT scan of her head, during which I was asked to step out of the MIBG unit briefly.

Everyone in the unit commented on Maya’s resilience. And they’re right — any adult would feel claustrophobic in that situation.

We made it back to cubicle 9 at around 12:30pm. 3.5 hours at the Nuclear Medicine! I felt older when we got back to cubicle 9.

Music Therapy arrived at 1pm, then the Hospital School Teacher around 1:30pm.

I took the opportunity, while the Music Therapist was strumming her guitar, to nip down to the Kitchen Lagoon (hospital restaurant) for food. Big mistake — huge queue, eeek! By the time I got back, I was told Maya had been unsettled while I was gone. Apparently, she “missed me”. I’d only been away for 20 minutes.

The Hospital School Teacher kept stopping and starting her sensory storytelling as I tried to settle Maya — checking her nappy, repositioning her, scanning her from head to toe again and again. She was still crying. Still unsettled. Something wasn’t right.

I went full Columbo mode, trying to work out what I was missing.

Then I held her LEFT hand — and felt it. Her cannula bandage was soaking wet. This is the cannula where Anakinra is infused continuously, 24 hours a day for more than six weeks now. I immediately went out and told the nurse. It wasn’t that Maya missed me. Her cannula had tissued and it was hurting her badly. It’s so easy to presume, especially with a non-verbal child, that distress is emotional rather than physical.

Anyway — it was sorted. Numbing cream applied to all potential new cannula sites. The doctor placed a new cannula in her RIGHT hand. Anakinra infusion resumed.

I gave Maya a full bed bath, creamed her arms and legs, washed her hair — just to help her feel fresh and comfortable for the afternoon.

Later, PT and OT came along and we hoisted Maya onto her tilted chair. I massaged her while she rested there, with relaxing piano Christmas music on her little JBL speaker, and she actually fell asleep. She looked peaceful. Calm. Just chilling.

I’ve noticed her neck muscles are getting a little stronger every day — yay. And no one would be surprised to hear that Maya smashed it again: she sat on that tilted chair for an hour and a half! We only hoisted her back to bed when she started groaning again. Nappy change, more massage to her feet and legs — and she slept through the whole evening.

At 1am, her night nurse and HCA cleaned her again — another soiled nappy, thanks to Amikacin antibiotics causing diarrhoea.

Overall, Maya had a very busy, full-on Wednesday.

I only managed to eat once — and even then, it was bits here and there. No fresh air. No swim. Today, every part of me belonged solely to Maya.

People tell me I’m strong. But what other choice do I have? We’ve been dealt bad card after bad card. You don’t get to opt out.

A mother’s resilience isn’t about being unbreakable — it’s about showing up again and again, even when every day feels like Groundhog Day.

The emotional and financial support from everyone truly keeps both me and Maya going. And for that, I just want to say thank 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

Whatever the MIBG scan results show, we will still be here at GOSH — no matter what — until Maya is back to her baseline: talking, eating, drinking, running around… and singing karaoke again. 🎤 🎶 💫