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Maya’s Weekend Update: Friday 5th – Sunday 7th December 2025 This weekend began with such promise. Maya was calm, settled and content with her Daddy by her side. On Friday, Daddy’s best friend Lee spent the day with them, bringing warmth and familiar laughter into our hospital room. Maya’s teacher, the ever-kind Sue C, also visited to support her wellbeing. The OT tried sitting Maya in the tilted chair, but her exhausted little body just wasn’t up for mobilising. Back to bed

Thursday 4th December 2025 8 days without a bowel movement… and then the Docusate kicked in a little too well. After two days of loose stools, Docusate is now just PRN (as needed). Poor thing — Maya’s little body can’t catch a break. This morning, Maya’s port access came loose, so her TPN had to be stopped. (Total Parenteral Nutrition) TPN is liquid nutrition given directly into the bloodstream when a person can’t eat or absorb food normally. Maya was re-accessed later, but i

Tuesday 2nd & Wednesday 3rd December 2025 I hadn’t slept all night. Monday night, 1st December, was chaos. Maya was supposed to have 1:1 nursing — that’s what her condition requires. But her nurse had been allocated another critically unwell child to care for… because of staff sickness. Machines alarming… 6 IV drip machines, sounding like an orchestra… my child needing constant care… and only one pair of hands to do the job of two. I helped as much as a mother could — despera

Monday 1st December — Today began with a moment that shook me to my core. When the Palliative Care Consultant walked into Maya’s room with a doctor and a nurse, it felt as though the air was knocked out of me. My throat went instantly dry, my heart pounded so fast it felt like it might burst, my feet went cold and sweaty, and I literally choked on my own saliva. Why is the Palliative Care Team here? Why are they introducing themselves to me? They spoke softly and kindly, expl

🗓 Saturday 29th November 2025 Today was a quiet one for Maya. She slept for most of the day, with her leg splints on for two hours and off for two hours, just as physio planned. For a moment, it looked like her thermoregulation was finally improving — she managed to keep her temperature between 36.8–37.1°C without the Bair Hugger blanket. But by night, her nurse recorded 36.1°C, and the warming blanket had to go back on. A reminder that recovery from ICANS isn’t linear. Her

Saturday 29th November 2025 Maya’s Update: From ICU to the Ward — and the Road Ahead Monday 24th November — Discharged From ICU On Monday afternoon, Maya was discharged from ICU and brought back to the ward. It was a huge step, and we were grateful… but also VERY overwhelmed, because this transition wasn’t smooth or easy. Maya continued having scary oxygen desaturations, the kind that plunge your heart into your stomach. She has extremely fragile lungs right now, and even a s

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