Haemophagocytic Lymphohistiocytosis (HLH) and meeting Apollo today!

HLH stands for Hemophagocytic Lymphohistiocytosis.

It’s a rare, life-threatening immune system disorder where the body’s immune system becomes dangerously overactive. Instead of switching off after fighting infection, the immune cells keep firing, causing severe inflammation and damage to the body’s own tissues and organs.

In simple terms: 👉The immune system goes into overdrive and can’t stop itself.

This is the condition Maya’s consultant is actively intervening with, aiming to stop it before it develops into a serious complication. Maya had IV Siltuximab and Etoposide yesterday. And Maya also had another platelets transfusion on Thursday 18th.

Thursday, and Friday – 19th December 2025

Thursday, overall, was a mostly okay day for Maya — apart from the now all-too-familiar early morning fevers. For the third day in a row, her temperature spiked at around 5am. It’s becoming a pattern none of us asked for.

By Thursday afternoon, Maya was noticeably subdued. Her breathing changed — shallow breaths punctuated by one deep breath every couple of minutes. Her heart rate dipped as low as 69 bpm. While technically within normal limits, it isn’t normal for Maya. When she’s asleep, her heart rate usually sits around the mid-80s, occasionally dropping to the late-70s — but 69 is low for her.

And of course… Maya being Maya — she does like a bit of drama!!!

Because of these changes, she was closely monitored overnight. The nurse-in-charge personally took over Maya’s care, and the bank nurse was reassigned to another child (horray!). It was reassuring to know that the doctor did review Maya on hourly basis overnight and these extra eyes and experience were focused solely on Maya.

Friday 19th December 2025

Friday started early with a bed bath, and usual range of movements joint exercises which I do for Maya religiously. By around midday, Maya was sat up in the tilted chair. It felt like a small but meaningful step.

She had a busy day with visitors — Uncle Antony, Nanny Dora, and Grandad Mike — filling the room with love, familiar voices, and gentle normality. While they spent time with Maya, Terry also arrived from Kent, and we had a rare window together and managed to eat a proper meal. It felt utterly luxurious, simply because I don’t get to see my husband properly during the week. Those moments matter more than words can say.

Another absolute highlight of the day was a visit from Pet Therapy Apollo, the gentle little Shih Tzu. Watching Maya take comfort from Apollo’s calm presence was incredibly special — a reminder that healing doesn’t always come from medicine alone. Sometimes, it comes on four paws, with kind eyes and unconditional love.

Maya also had FaceTime video chat with her big brother Jerome and gf Sophie who showed her their Christmas tree and presents underneath!

Maya was too tired for edge-of-bed exercises, so the physios adjusted plans and continued with a passive bike ride on the bed instead — meeting her where she was, not where the schedule wanted her to be.

When Nanny Dora (Terry’s Mum) and Grandad Mike (my stepdad) left around 5pm, Maya became unsettled for a while — a sign of how much more aware she’s becoming of her surroundings. Terry and I stayed close, playing with her, sharing giggles, giving lots of massages and moisturising her skin all over, and gently stretching her arms and legs.

Although Maya still doesn’t have facial nerve connections, the way her shoulders shake when she bursts into fits of laughter — silent giggles bubbling out of her — was pure music to our ears. Proof that she is still so very much there.

A huge highlight of the day was requesting — and being granted — a switch from IV to oral medications via (naso-gastric) NG-tube. Aciclovir and Esomeprazole are now oral, and Ondansetron and Cyclizine are given as “push” medications. Amikacin (antibiotics) was also stopped which hopefully will help stop diarrhoea too. Her bottom is becoming sore and red. Small changes, but ones that mean fewer IV lines, fewer interruptions, and a little more comfort for our girl, and me!

The love and support from our community continues to hold us up on the days when our legs feel like giving way.

“When a child fights cancer, the whole family fights — and when a community stands with them, that fight becomes lighter to carry.”

There is no greater heartbreak than being a parent watching your child endure the toxic brutality of cancer treatment, feeling utterly helpless as the suffering unfolds before your eyes.

But even in that heartbreak, HOPE survives.

“Because love is stronger than fear — and hope, somehow, always finds a way through.”

To anyone who would like to support us during these unimaginable circumstances,

please feel free to message me directly. Every bit of love, kindness, and encouragement truly makes a difference. Thank you all for sharing Maya’s inspiring story far and wide. She is one marvellous superstar child! 💫