ICU Remains a Real and Terrifying Possibility

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 neurological treatments. Although she has now been moved to the oncology ward with one-to-one nursing, her recovery is very slow and she remains extremely unwell.

Cardiac and medical monitoring

Yesterday (16th November), she had two ECGs (morning and night) and an echocardiogram at midday. The cardiology team are monitoring her closely after she developed decompensated heart failure, though there has been slight improvement in her LV ejection fraction.

The CSP/ICU team reassessed her late last night as she appeared distressed, in pain, clutching the left side of her chest and abdomen, and with a rising heart rate. She remains at high risk of needing to return to ICU at any moment.

Nutrition and current care

Maya has now been started on 24-hour TPN (total parenteral nutrition) with added potassium to stabilise her electrolytes. This is giving her all the nutrition she needs through her line while her body focuses on healing, and her levels are being monitored very closely.

She needs full care from top to toe. Her one-to-one nurse is very good with her personal care — she is in nappies and has a urinary catheter — and I remain extremely vigilant with oral care and preventing pressure injuries by turning her every 2–3 hours. I also massage all four limbs every couple of hours.

Her eyes don’t close properly, so the nurses apply lubricant to prevent drying, and I keep her lips and mouth clean and protected. She cannot swallow and is at risk of choking, so I check her mouth regularly for safety.

Today she opened her eyes more, but she remains staring and still does not follow any voice commands. She makes grunting noises when in pain or uncomfortable. The physio visited and did a lot of passive movements with her, and I helped fit her leg/foot splints which needed to stay for only an hour today, and two hours tomorrow.

The expectation is that Maya should be able to walk independently within 3 months’ time frame.

Family impact

So for now, I’m not working now for the moment.

I’ll decide week by week. By Thursday, I will let my workplace know if I can work next week. I am very grateful for my employers’ compassion and understanding of my situation.

Visiting schedule from last week:

Tues-Fri (11th-14th) - Enzo (son #3) and gf Katelyn (with Lola on Tuesday-Wed)

Thursday 13th - Nanny Dora and Grandad Mike

Terry was here with me Friday-Saturday-Sunday. I had to send him home on Tuesday as he was utterly heartbroken seeing Maya when she was having an EEG, too many wires attached to her head. We both broke down on Tuesday when Maya went into ICU but I kept going and stayed strong for Maya.

Terry came back Fri 14th to -Sunday 16th -

Saturday 15th - Kate and Charlie (Maya’s best friend) so Terry and I were able to have a couple of hours breather.

Sunday 17th Nov - Jerome and gf Sophie

Monday (today 17th Nov) - Leon and partner Ellie

Tuesday (tomorrow 18th Nov)- Jerome and gf Sophie and Lola

Wednesday 19th - Nanny Dora and Sue Carter (Maya’s tutor)

Thursday 20th - ?Grandad Mike.

Friday-Sunday - Terry will be back to spend time with me and Maya.

Saturday 22nd - my friend Jo is coming back to spend time with Maya, so that Terry and I can then spend time together and perhaps go out for a meal together or walk along the streets of London, for a couple of hours, taking our minds off this horrendous situation we are in…

Leon (son #2) and Ellie came to visit today (17th Nov), and Leon broke down in tears seeing his sister Maya like this. Just two weeks ago Maya was playing basketball — now she is barely with us. As a mother, it is utterly heartbreaking to witness my children breaking for their sister. I don’t know if there is such a thing as being “double-heartbroken”… but that is exactly how it feels.

Medical team efforts

The consultant is very worried about Maya and is pulling together every great mind and every experienced CAR-T specialist across the UK and worldwide to explore every possible option to treat this ICANS and bring our girl Maya back to us.

The guilt is absolutely killing me and my husband — we can’t help but feel like we brought this upon her, even though no one could have predicted this outcome. When you’re fighting relapsed neuroblastoma, there aren’t easy choices. Chemotherapy can keep the cancer at bay temporarily, but it always comes back, and eventually Maya’s little body would not be able to keep enduring it. CAR-T felt like the only path left with a real chance.

A small breath

I am grateful for visiting family today — it gives me a moment to step outside, breathe fresh air and remember the real world exists beyond hospital walls.

Thank you all for your continued support, love, and understanding during this impossibly difficult time. To those who arranged a standing order, and sent by bank transfer or PayPal, Thank you from the bottom of our hearts.

#childhoodcancerawareness #neuroblastoma #cartcelltherapy #hope #gratitude

P.s.

I want to share a little about the CSP team (Clinical Site Practitioners) at GOSH, because they are truly one of the reasons Maya is still able to stay on Lion Ward instead of going back to ICU. Every time I notice even the tiniest change in Maya — a new sound, a shift in her breathing, a rise in her heart rate, anything that worries me — I alert her bedside nurse straight away, as I’ve been instructed to keep an extremely low threshold for calling for help. And each time, the CSP team comes immediately.

They are specialist nurses who act as the hospital’s rapid-response and advanced assessment team. They check Maya closely, spot the smallest signs that she may be deteriorating, and intervene straight away to stabilise her. Their goal is powerful and simple: to keep Maya safe on the ward for as long as possible, and prevent another ICU admission unless absolutely unavoidable.

They work hand-in-hand with ICU, oncology, neurology and cardiology, and if Maya does need to return to ICU, they can make it happen within minutes.

For us, their presence brings so much reassurance in this terrifying time. Knowing that these skilled, compassionate professionals respond the moment I raise a concern — and that they are constantly fighting to keep Maya stable — means more to us than I can express. We are so deeply grateful for them.