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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

When Hope Looks Like Ten Minutes Upright Monday, 8 December 2025 Our days are full of things we once took for granted — things most families never have to think twice about. Sitting. Standing. Blinking. Speaking. Maya can no longer do any of those things on her own. She can’t move her arms or legs. She can’t hold up her neck. Her tiny body lies still, a prisoner of the damage caused by treatment that was meant to save her life. She rarely blinks now — and when she does, it’s

Maya’s Weekend Update: Friday 5th – Sunday 7th December 2025 This weekend began with such promise. Maya was calm, settled and content with her Daddy by her side. On Friday, Daddy’s best friend Lee spent the day with them, bringing warmth and familiar laughter into our hospital room. Maya’s teacher, the ever-kind Sue C, also visited to support her wellbeing. The OT tried sitting Maya in the tilted chair, but her exhausted little body just wasn’t up for mobilising. Back to bed

Thursday 4th December 2025 8 days without a bowel movement… and then the Docusate kicked in a little too well. After two days of loose stools, Docusate is now just PRN (as needed). Poor thing — Maya’s little body can’t catch a break. This morning, Maya’s port access came loose, so her TPN had to be stopped. (Total Parenteral Nutrition) TPN is liquid nutrition given directly into the bloodstream when a person can’t eat or absorb food normally. Maya was re-accessed later, but i

Tuesday 2nd & Wednesday 3rd December 2025 I hadn’t slept all night. Monday night, 1st December, was chaos. Maya was supposed to have 1:1 nursing — that’s what her condition requires. But her nurse had been allocated another critically unwell child to care for… because of staff sickness. Machines alarming… 6 IV drip machines, sounding like an orchestra… my child needing constant care… and only one pair of hands to do the job of two. I helped as much as a mother could — despera

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, expl

🗓 Saturday 29th November 2025 Today was a quiet one for Maya. She slept for most of the day, with her leg splints on for two hours and off for two hours, just as physio planned. For a moment, it looked like her thermoregulation was finally improving — she managed to keep her temperature between 36.8–37.1°C without the Bair Hugger blanket. But by night, her nurse recorded 36.1°C, and the warming blanket had to go back on. A reminder that recovery from ICANS isn’t linear. Her

Saturday 29th November 2025 Maya’s Update: From ICU to the Ward — and the Road Ahead Monday 24th November — Discharged From ICU On Monday afternoon, Maya was discharged from ICU and brought back to the ward. It was a huge step, and we were grateful… but also VERY overwhelmed, because this transition wasn’t smooth or easy. Maya continued having scary oxygen desaturations, the kind that plunge your heart into your stomach. She has extremely fragile lungs right now, and even a s