A Sudden Turn We Didn’t Expect 16.11.2025

Just as we thought we were finally stepping out of the woods, everything changed again overnight.

Maya’s condition has taken another worrying turn. Her breathing has slowed right down, her oxygen levels keep dipping below where they should be, her blood pressure has fallen, and her body has slipped into a coldness the nurses are trying to gently warm with a Bair Hugger blanket. Because her oxygen sats and temperature are unstable again, she’s back on oxygen mask, they’ve had to restart her IV fluids very carefully so she doesn’t go into overload like before.

Before leaving ICU, Maya had already undergone a lumbar puncture. This morning, she’s had a full 12-lead ECG, and now she’s about to have her third echocardiogram as the team works to understand what’s causing these sudden changes. There’s a possibility that this could be post-ICU instability, or still part of ICANS — the body sometimes crumbles a little after the intensity of critical care — but right now, no one knows for certain.

It is deeply disheartening to watch Maya’s little body fight through yet another storm when she has already endured so much. We hoped she’d get even a small break, but instead she’s back in a fragile and unpredictable place.

We know how many of you have been carrying her in your hearts, following every step, willing her through each hour. Please keep holding her tightly today. She is not out of the woods yet — not by far — but she is still fighting, and we are right here fighting alongside her.