When the Immune System Becomes the Enemy

Thursday 18th December 2025

Today was one of those days that reminds us that cancer can change your life by the hour.

At 9am, the Orthotics team came to deliver and fit Maya’s personalised splints — complete with paw prints and bright colours. We’re hoping these splints will help prevent her ankles from over-extending and provide a little extra support as she works on standing and moving again.

At 12pm, Maya stood on the tilt table for around 20 minutes — a huge effort for her, one that takes strength in ways most people never see.

She was also assessed by SALT and OT.

Speech and Language Therapy (SALT)

Occupational Therapy (OT)

For now, she isn’t quite ready for puréed foods. Her swallowing reflex hasn’t fully returned, and some of the purée slips out from the front of her mouth rather than being safely swallowed.

So we keep things gentle and safe — sponge sticks and sterilised water — and she’ll be reassessed on Tuesday 23rd December. Progress isn’t always about moving forward quickly; sometimes it’s about protecting what’s fragile while the body catches up.

Later in the day, Maya’s consultant sat with me to explain the next steps. Maya has been spiking temperatures for three days in a row, with another fever just a week ago. Infection has now been ruled out. Her ferritin levels/triglycerides/LDH (lactate hydrogenase) are going up and up, CRP is normal, haemoglobin struggling to improve but right on the cusp, platelets aren’t holding — she’s needing transfusions every 2–3 days — and the team believes this is being driven by something called HLH.

HLH (Haemophagocytic Lymphohistiocytosis) is when the immune system goes into overdrive and attacks the body by mistake. It’s like the alarm system never turns off, creating inflammation that can harm organs and blood cells. Maya will start prophylactic treatment to calm this immune overreaction.

The first drug is Siltuximab. Simply put, it helps turn down the volume of the immune system when it’s producing too many inflammatory signals. The second is IV Etoposide, which slows down overactive immune cells driving the inflammation and damaging her blood cells. Both drugs are familiar to Maya, so we hope she won’t have any reactions, but she will be closely monitored.

This evening, around 7pm, Maya’s breathing became shallow, with a deep breath every couple of minutes. Her heart rate dropped to around 69 — still technically within normal limits, but low for Maya, whose usual resting heart rate sits between 84 and 125bpm (her sleeping heart rate around mid-80s bpm). When she’s in pain, it can climb as high as 140-150 bpm. Her feet were also slightly swollen today, showing signs of oedema.

The doctor ordered a blood gas to check how her body is coping. If her pulse rate drops below 65 bpm or her blood pressure falls below her target of 85/50, she may also have an ECG to monitor her heart closely. This level of vigilance ensures any changes are caught immediately.

Days like today remind me how quickly things can change, and how closely every breath, number, and movement is watched. Maya is surrounded by an extraordinary medical team, but this journey still asks more of her than any child should ever have to give. In all of this, there’s no timeout for a parent or caregiver; every moment, every decision, every heartbeat is ours to hold and carry.

If you are able to share Maya’s story or donate towards her cancer journey, please know that every act of kindness helps carry us through days like this. Your support doesn’t just help ease financial burdens attached to childhood cancer diagnosis — it reminds us that we are not walking this path alone.

To those willing to donate and organise a monthly Standing Order, could be for 3 or 6 months or a year:

Santander

D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

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

In a journey like this, every act of kindness and compassion, no matter how small, never goes unnoticed and carries us forward. So thank you all so much from the bottom of our hearts.