When “Yes” and “No” Mean Everything

Monday 29th December

Today brought a welcome visit from Uncle Antony — Terry’s brother — a familiar face and a reminder of family, normality, and love in the middle of hospital life. Small visits mean a lot here.

There’s also encouraging news on the medical front. Maya’s steroid dose (Methylprednisolone) is finally being reduced — down from 78–78 (morning and evening) to 39–39. If all goes well, by Friday 2nd January it will be 20–20. When Maya was very poorly after the Car T Cell infusion, her steroids were 250-250 (morning-evening).

So we’re counting the days when she’s off it.

Long-term steroids have taken a heavy toll on her little body: the moon-shaped facial swelling, muscle weakness, thinning skin, mood changes, bone strain — side effects no 12-year-old should ever have to endure. We cannot wait to see the facial swelling ease and for her strength to slowly return.

A parcel arrived today, along with a few more Christmas cards. Each one is a quiet reminder that people are thinking of Maya, holding her in their hearts. We’re deeply grateful for that kindness — it carries us.

The evening was gentle. YouTube Kids sing-alongs and karaoke filled the room, followed by a little bit of Wicked – Part 1. Maya is becoming more aware of her voice again. She’s making random sounds, occasional words — not quite intentional yet, but full of promise. One thing is certain: she can read. She chooses videos on YouTube herself, nodding her head for “yes” and shaking it for “no”. These may seem like small things, but here, they are huge wins — the kind that deserve celebration.

Another Groundhog Day in hospital. And yet…

Gratitude doesn’t mean the struggle disappears.

It means we notice the miracle that she’s still here —

still fighting, still showing us what courage looks like,

one breath, one nod, one day at a time.