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Monday 29th December Today brought a welcome visit from Uncle Antony — Terry’s brother — a familiar face and a reminder of family, normality, and love in the middle of hospital life. Small visits mean a lot here. There’s also encouraging news on the medical front. Maya’s steroid dose (Methylprednisolone) is finally being reduced — down from 78–78 (morning and evening) to 39–39. If all goes well, by Friday 2nd January it will be 20–20. When Maya was very poorly after the Car T

I often wonder how a single parent copes on a children’s cancer ward. I guess the honest answer is: you rely on the nurses, the HCAs, and the call button when your own body gives up. They step in constantly, to keep your child safe while you gather yourself. And I’m deeply grateful that if I were to fall truly unwell, my husband Terry would drop everything and take over — that safety net matters more than I can ever say. Sunday 28th December — One of Those Quiet Days Sunday s

You’ll never guess what today’s wild agenda included… No, not cocktails or Boxing Day sales — welcome to “Maya’s Luxury Wellness Retreat”: Today’s programme featured (but what else would it be?) : • Full-body moisturising • Massage • Range-of-movement exercises • Ambient spa music (huge thanks to Grandad Mike for the JBL speaker — vibes matter) Honestly, if TripAdvisor reviewed hospital rooms, we’d be pushing five stars. https://share.icloud.com/photos/028tQxpUrHzbYkNZtNpci6T

A few nights ago, Maya spent most of the night doing this. She wasn’t upset or uncomfortable in any way. No signs of distress. She was relaxed, calm, almost serene. And then, every now and then, a sound would emerge. Gentle. Intentional. Not quite familiar, yet full of meaning. It was as if something that had been silent for a long time was remembering how to make itself heard. It felt like the beginning of her voice returning. Maybe not words yet, but the path toward them. H

Our Boxing Day 2025 was tender and full of little moments that somehow felt big. We spent a good part of the day on video call with my mother, aka Nanny Marsha, all the way in the Philippines (8 hours time difference), and with Lola too who was at the time in Kent. The four girls on the screen together. Different places, same love. Watching them smile, wave, and laugh through the screen felt precious. One of those moments you want to hold still for a bit longer. Terry even br

25th December 2025 — Christmas Day Christmas Day was gentle but full of meaning. We were grateful for free pastries and coffees at the Lagoon Restaurant while Maya’s HCA stayed with her. Spread a Smile charity came to lift the mood, and Thomas the therapy dog brought some much-needed joy — animals really do have a special way of helping, don’t they. https://share.icloud.com/photos/053WSkYCAG4zuvWM-6_VZL7ZA I didn’t wake up but I soon realised that Santa was indeed sneaking in

21st December 2025 – Sunday Our dear friend Jo (Joanne Dolan) came to visit Maya. Her visit gave me and Terry the precious opportunity to step outside the hospital for some fresh air. Something so small, yet so vital. We are incredibly grateful. Monday 22nd December A visit from my nurse colleague and friend Kirsty Hurd, along with our friend Suzanne Pearce. They arrived with Christmas goodies and kindly treated me to lunch. At the same time, Jerome (son #1) and his girlfrien

20/12/2025: Saturdays on the ward feel different. There are fewer people around, the corridors are quieter, and the day seems to move more slowly. It’s one of those days where not much appears to happen on the outside, but inside, there’s still so much going on — for Maya. It has now been several weeks since Maya’s CAR-T cell infusion on 4th November. Then came the storm: her first ICU admission on 11th November, followed by a second on 18th November, before we finally settle

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, aimin

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 he

Thursday night 18th December 2025 8:30pm Night nurse tonight is a bank shift nurse and has never worked on Lion Ward before. She doesn’t know where anything is — bless her. Well… she doesn’t know Maya at all and her ICANS (neurotoxicity syndrome). ** A bank nurse is a trained nurse covering a shift who doesn’t usually work on that ward, so they may not yet know the routines or where everything is. ** I noticed a bottle of milk hanging on the IV stand and asked, “ Why is Maya’

Wednesday 17th December 2025 We left cubicle 9 at 8:50am to head down to Nuclear Medicine (Level 1) for Maya’s MIBG scan booked at 9am. No anaesthesia. Just Maya, lying flat on her back with both arms up, while a humongous machine slowly worked its way from her feet all the way up to her head — ten minutes of imaging per body part, and another z40 minutes on the torso and bladder, so about three hours in total. At one point her head was gently turned to the right, as well as

Tuesday 16th December was a reminder that recovery from ICANS is never a straight line. Maya had been doing so well on Monday with her passive bike ride on the hospital bed, and then at 4:30am the next morning, she spiked a temperature above 38°C and woke me up moaning and groaning. https://share.icloud.com/photos/0e72k9RY-PrHY7pE7-PEdzeuQ Monday night had already been rough—the IV machines never stop. Each has two alarms: one saying “Near End of Infusion” (which could be 3,

Monday 15th December 2025 began with a different kind of movement. Maya this time has been introduced to the bike by her physiotherapist, cycling from her hospital bed. It was all PASSIVE, as she still doesn’t have any active movement in her legs—but it was movement all the same. Maya managed around 0.7km. It might not sound like much, but here it really is. Every turn of the pedals matters. Every little effort counts. I could see Maya’s muscles were burning from the exercise

Twice a week, Maya receives platelet transfusions. Once a week, she needs a blood transfusion. It has become part of our routine — bags carefully checked, lines connected, numbers monitored — but it never becomes normal. Each transfusion is a reminder of how fragile life can be, and how incredibly generous strangers are. What many people may not realise is this: without blood and platelet donors, Maya simply wouldn’t be here. It’s that stark. Every donation is time — more mom

Weekend Reflections: 13th–14th December This weekend felt like a quiet tug-of-war between holding it together and letting myself feel everything. Saturday 13th December brought a small pocket of normality. Maya’s big brother Jerome came to visit with his girlfriend Sophie, filling the room with familiar voices and warmth. Their presence gave me something precious — permission to step away briefly. I managed a quick swim, nothing fancy, just enough water and silence to remind

Friday 12th December started with one of those moments that really makes you stop and think about how much goes into caring for a high-dependency child. Maya had an abdominal ultrasound booked for 9:30am. Getting her there is never simple. This isn’t just a quick trip down the corridor. Maya has to be transported on her bed, with oxygen running, monitors attached, emergency equipment and a defibrillator coming along “just in case”. A porter carefully pushing her bed, her nurs

Thursday 11th December brought warmth into an otherwise heavy place. Tiffany from The Kent Review came to visit us, arm full of goodies and kindness. We talked about the little tribe that forms here — mums instinctively finding one another, lifting each other when the weight becomes unbearable. I often come across strong and confident, and maybe that’s because survival demands it. But beneath that surface, I carry the same fear as every other parent here. We’re fighting a thi

Wednesday 10th December began in the shadow of Tuesday’s general anaesthetic, and the morning reminded us just how fragile recovery can be. Post-GA, Maya suddenly desaturated to 76% when secretions built up around her throat. The anaesthetics had dulled her respirations and swallowing, and for a few terrifying moments everything felt very precarious. She needed 15 litres of oxygen for around 20 minutes, along with a nebuliser to help loosen the mucus. Watching her struggle to

🎄 Tuesday 9th December — Christmas Songs & Big Procedures 🎄 Today started with soft Christmas songs playing in the background — a small reminder that the festive season still exists outside these hospital walls. Maya enjoyed a gentle massage, reflexology and plenty of moisturiser to keep her little body comfortable. OT came to help, but the sling we needed hadn’t been washed yet, so we focused on stretching exercises and a little bit of bubble play instead. Simple moments t