🩶 When the Palliative Team Walked In — A Moment of Pure Fear

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, explaining that their role covers many things — symptom management, supportive care, guidance through complex medical needs — not just end-of-life care. I understood what they were saying, but fear doesn’t care about logic. Their presence wrapped itself around my stomach like a tight knot, and even though I tried to stay composed, the uneasiness followed me for the rest of the day. It’s terrifying how quickly hope can wobble the moment you hear the word palliative.

A Quiet Weekend, A Heavy Monday

Maya has had a calm and restful weekend — exactly what her brain needed. On Sunday she received platelets, and on Monday she had a blood transfusion. These small but essential steps help her body stay steady as she continues her slow recovery from ICANS. Platelet and blood donors are lifelines for children on Lion Ward at GOSH — their gifts quite literally keep our little warriors alive. If you’re able, please consider donating; it truly saves lives.

Today the physiotherapists and occupational therapists assessed her muscle tone and movement, or rather, how little she currently has. Hearing their observations has been a lot to take in.

I’m longing desperately for some sense of normality — to feel cold outside air on my face, to see our pets Honey, Timmy and Mochi, to laugh with friends, to sing at karaoke again, to enjoy the pantomime (Marlowe panto) we had booked (last year’s early birds rate) for this Friday 5th Dec (which we can no longer attend), even to return to work because I genuinely miss the rhythm of my life and the routine of my days. But I can’t step away from Maya until she can communicate again, until her arms wake up, until I know she’s safe.

ICANS is unpredictable; things can tip within minutes. A change in breathing, blood pressure, or temperature can happen out of nowhere, and her team is monitoring her closely around the clock.

And just as I was typing this, the night-duty doctor came in to check Maya again because her blood pressure dropped below her target range. Another reminder that ICANS shifts quickly, without warning.

ICANS is scary.

🤍 Maya’s Medical Day in Detail

Maya’s steroid dose — Methylprednisolone — has been reduced from 250/250 to 200/200 today. The team is slowly reviewing and titrating down the medications that may no longer be needed at high doses, watching carefully to see how she responds over the next few days. Every adjustment feels like a delicate balancing act.

Maya was prescribed Docusate today as her bowels haven’t opened since Tuesday 25th November. Being bedbound means her gut has slowed right down, and with ICANS (brain sleeping) and with the huge number of medications she’s receiving, it’s no surprise her motility is sluggish. She is “IV-heavy,” which is why she has required 1:1 nursing.

Tonight (Monday night) however, the ward is short-staffed. Her night nurse is also caring for another child, but thankfully a Healthcare Assistant has been assigned directly to Maya. The HCA is actually a newly qualified doctor who recently passed her exams and will be applying for medical posts at the end of December. For now, she’s supporting as an HCA — and I’m grateful for her calm, capable presence.

Maya’s temperature spiked to 37.5°C earlier this evening, just as when the blood transfusion was finished, so the Bair Hugger warming blanket was removed. An hour later she was 37.0, then 37.4 — these tiny shifts give us hope that maybe, slowly, her brain is beginning to regulate her temperature again. Or it could simply be the aftermath of her transfusion. We’ll see.

A bright moment: Maya has been off her 2L nasal oxygen cannula since 2pm yesterday, and now, nearly 7am, she’s still holding strong at 100% oxygen saturation. Her lungs might be finding their strength again. She did desaturate briefly during a nappy change around 8pm (to as low as 67% !!!), but she was given Furosemide during the transfusion to help balance fluids — so the frequent wet nappies (every 2–3 hours) are to be expected.

During nappy changes, even the gentlest turning or repositioning can cause Maya to desaturate. When this happens, the oxygen mask has to be placed over her to support her airway. And each time the monitor flashes red and lets out that high-pitched alarm, it sends a jolt of fear through me — a sound that would worry any parent instantly.

🤍 Feeding Update

Maya is on TPN (total parenteral nutrition) via her port but also receives NG tube feeds (via her nose). This weekend she made great progress — moving from 20ml every 4 hours, to every 3, then to every 2 hours. But Monday morning, the nurse aspirated more than 30ml of bile, which is higher than usual. So she’s back to 3-hourly feeds with the aim of returning to 2-hourly if her tummy tolerates it.

This is ICANS: progress, then a plateau, then sometimes steps backwards. But the long-term trend is still forward, and that’s what we cling to.

🩶 Family, Resilience, and Perspective

Terry has been struggling to process it all, so he’s holding the fort at home while I stay by Maya’s side, doing everything I can to keep our world from falling apart.

When a child fights childhood cancer, the whole family changes. Your world shrinks to the size of a hospital room yet somehow expands to include emotions, strength, and fears you never knew existed. You learn what truly matters. You learn the weight of love. You discover resilience you never asked for. And even on the hardest days, hope refuses to leave.

Thank you — truly — for every message, prayer, donation, share, visit, and act of kindness. Your love carries us in ways you may never fully realise.

To those that have asked:

PayPal to dellanie_nash@yahoo.co.uk (as a gift)

Santander

D C Nash

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Reference: Maya’s Journey

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