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Thursday 27th November — My 50th Birthday — Fifty. I never imagined I’d be spending this milestone birthday in a hospital cubicle, listening to beeping monitors and watching my brave girl fight her way through ICANS recovery. And yet… somehow, despite the heaviness, my heart feels wrapped in the biggest, gentlest wave of love. To everyone who messaged, posted, commented, sent photos, videos — truly, thank you. I read them all while sitting beside Maya, and you have no idea ho

Wednesday 26th November 2025 Today terrified me in a way I can’t shake. During chest physio, while they were manoeuvring Maya to help shift the secretions sitting stubbornly in her lungs, she suddenly desaturated… all the way down to 74%. Her face turned blue. I froze. My whole body went clammy. My heart felt like it dropped straight through the ground. I genuinely thought I might vomit. It’s a sight no parent should ever have to witness — yet here on Lion Ward, this has beco

Facebook memories hit me hard this morning. Baby-Maya, tiny and sweet, completely unaware that neuroblastoma was already in her little body. Then I think of the photo from four weeks ago, right before her CAR-T infusion. Taller. Braver. Stronger than any kid should ever have to be. And then today’s photo. My 12-year-old girl with a nasal cannula, an NG tube, already twice admitted to ICU, seconds before physio had to suction her again as ICANS keeps fighting its ugly fight. T

Tuesday 25th November has been another REALLY heavy day for Maya. Her post-ICU instability is showing again, and it honestly feels like we’re walking on eggshells with every breath she takes. Her desaturations today proved just how fragile she still is. During the weekdays, Maya will have had visits from the Research Oncology Team, the Ward Doctor Team, CSP (Clinical Site Practitioner), ICU Team, Physio/OT, Play Therapists, Pet Therapy, Music Therapy, Hospital School, and the

Today has been another heavy day in Maya’s journey. Although her neurological status hasn’t changed — she’s still only responsive to pain and doesn’t respond to voices — her oxygen needs are not “intensive” enough for ICU. She doesn’t need Optiflow, but she still depends on oxygen via nasal cannula or mask. She continues to have apnoea spells, desaturating to 81%, usually triggered by secretions or simply by being repositioned to relieve pressure off her bony areas: sacrum, s

ICU Update – Sunday Evening 23/11/2025 Last night was another long, heavy night for our girl. After a stable Saturday, Maya suddenly slipped back into breath-holding and desaturations, dropping to 84% at times. She needed suction after suction; her chest sounded thick with secretions, and the team increased her Optiflow to 70L/min just to support her. But by 6pm tonight, she has fought her way down to 30L/min, now on air (21%), which feels like a small but hard-won victory. M

….and Why We’re So Grateful She Stayed in ICU. Saturday 22/11/25 Maya stayed stable throughout the Friday night, and she’s managed all of this without sedation, which feels like a small blessing in the middle of everything. Terry and I kept to the two-hours-on, two-hours-off leg splint routine, and every time they came off, I massaged all her limbs and did the passive physio the team taught me. Her muscles are wasting away now, and it breaks my heart — but if these little exe

I left ICU on Thursday night, close to 11pm, after a long, reassuring chat with Maya’s night nurse. I tried to find comfort in knowing she would be watching over my baby girl — and she really did. Friday morning was the first time in a very long time that I slept without interruption… even if it was only about four hours. I spent the rest of the morning doing admin on my phone — cancelling and postponing all of Maya’s outpatient appointments: SALT, physiotherapy, her annual E

Thursday 20th November 2025 Can you imagine how daunting it felt to sit in a meeting room inside PICU, alone, with four clinicians — Maya’s consultant, the research doctor, the ICU doctor and her PICU nurse. Four walls that have heard far too many heartbreaking conversations about children. After a few minutes of niceties, the consultant’s face turned serious. My heart was racing. She summarised everything from the CAR-T cell infusion on Tuesday 4th November, right up to Maya

Maya Update – 20 November 2025 I’ve added stickers over Maya’s face to soften the photos as I know how hard they can be to see — but I also want to keep everyone updated as clearly as possible. 🫁 Scans & Tests Chest X-ray (18/11): Clear. CT scan (18/11): No swelling, but some new changes they’re watching closely. MRI brain & spine (with contrast 19/11): Again, no swelling, but new changes similar to the CT. EMG/Nerve conduction studies (19/11): Inconclusive because she was d

Wednesday, 19th November 2025 The 7AM call from GOSH jolted me awake — heart racing, palms clammy, every worst thought crashing through my head at once. But the moment I heard Maya’s ICU nurse’s cheerful voice, the panic melted. She apologised; she only needed me to come in by 7:45AM to sign the consent for Maya’s MRI brain and spine with contrast. At the Parents’ Kitchen, one of Maya’s supporters — Suzy— who happens to work at GOSH — spotted me. We talked for nearly 45 minut

Breathe, Maya… Breathe. That’s what I whispered through the night — over and over — as Maya began breath-holding for 10–20 seconds at a time. I had to tap her shoulder, squeeze her hand, gently call her back each time her brain “forgot” to breathe. Neither of us slept. I held her hands all night, sang to her her favourite karaoke tunes “Country Roads, Take Me Home”, “Daydream Believer”, “Three Little Birds”, “Lean On Me” on repeat. And every time she drifted off… she’d pause

Maya has been having repeated breath-holding episodes tonight — sometimes up to 20 seconds — with her oxygen dropping to 84%. I alerted the nurse straight away and the CSP came to assess her. They’ve done another chest X-ray (I’ve honestly lost count now… the 5th? Or ?6th since she was admitted on 28 October). We don’t know what’s causing this: – Sleep apnoea? – Melatonin? – Oral morphine? – ICANS? Yes, ICANS can potentially affect breathing in severe cases. ICANS is a neurot

It is full-on here… A brief update on Maya. Maya developed severe ICANS (neurotoxicity) following her CAR-T cell infusion on 4th November, causing significant brain inflammation and a markedly reduced level of consciousness. She is currently unable to wake up properly — only very fleeting moments of 5 seconds at best — and she has lost the ability to speak and walk. She only responds to pain. She received the highest level of care in ICU with intensive immunosuppressive and n

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 protectio

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

Relief. That’s the only word we felt when Maya was officially handed over from ICU to the Lion Ward today. We’d been bracing ourselves for this moment all morning. The big worry, of course, was that once she left ICU, the level of care would drop from that intense, minute-by-minute monitoring we’d gotten used to. But to our surprise—and honestly, our huge relief—Maya was allocated her own dedicated nurse for the whole day. One-to-one. No looking after three other children, no

Today, something beautiful happened. Something small on the outside, but huge for Maya… and for us. Just hours after Maya was moved out of ICU and into the Lion Ward—still on one-to-one nursing, still fighting her way back—Charlie walked in. Her Charlie. The boy who’s been by her side through so many chapters of this journey. Maya wouldn’t have been expecting it. And maybe that’s why it hit us so hard. The moment Charlie stepped into the room, something in the air shifted. Ev

Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS) Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS, a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma. Because of this inflammation, Maya has been experiencing: confusion struggling to speak tremors agitation seizure-like jerky movements and

— A Heartfelt Reflection on Gratitude, Kindness & Resilience When Maya’s body was being ravaged by what the doctors call “cytokine showers,” I heard her whisper, “Mum, please help me,” while her heart and lungs drowned in fluids. I watched her chest struggle for each breath, and I pulled the crash button as the monitor shrieked and her heart rate shot to 172 bpm. The pure terror in her eyes… that look is carved into my memory. I don’t think any parent can ever forget the mome