Maya’s Still Walking the Tightrope

Maya has come so far, and we’re so grateful for every tiny step forward. Being moved out of ICU was a huge relief, but I want to be completely honest with you all — she isn’t out of the woods yet.

Even though she’s now on the ward, her little body is still recovering from such an intense immune storm after treatment. ICU threw absolutely everything they had at calming it down — high-dose steroids, Anakinra, Tocilizumab, Siltuximab, Rituximab, and full anti-infective protection. These medicines saved her life, but the aftershocks don’t stop the moment you leave ICU.

Before she stepped out of intensive care, she had a lumbar puncture. This morning, a 12-lead ECG, and now she’s had her third echocardiogram. All of these is to make sure her brain, heart, and organs are coping after everything they’ve just endured.

The team is now giving Maya another drug called Ruxolitinib, which will help calm the immune system even further — like turning down the main volume knob when the body is still trying to shout. Her doctors are being cautious, careful, and determined to stay ahead of anything that is flaring back up.

So yes… we’re out of ICU, but we’re not yet in the clear. This post-ICU phase is very fragile and unpredictable. And although there might be bravado on my face when I speak to people, inside I am absolutely crumbling. Watching your child fight like this does something to you that words can’t explain.

Terry has gone back to Kent this afternoon to hold the fort at home, and Jerome and Sophie are here with me so I can try to catch a nap — and so Maya can rest quietly and focus all her strength on healing.

Maya is here.

She’s fighting with everything she has. She is surrounded by the most incredible medical team — and by all of you, who have held us up when we could barely stand.

Thank you, truly, for not letting us walk this alone. We feel every message, every prayer, every bit of love you send our way.