“I Want To Go Home”

2 January 2026

Apologies for the long gaps between updates. Since Maya has become more aware of her surroundings and is now able to communicate—albeit in a limited way (she sounds like she’s just come out of the dentist with her mouth still numb from anaesthetic)—my entire self has been devoted to her care, rehabilitation, and recovery. From the moment she wakes in the morning until she falls asleep at night, all my energy is focused on Maya. By the time she finally sleeps, I collapse too, exhausted, with no time or strength left for blogging.

Maya has slowly become more alert and responsive. While some of her speech remains unclear, cognitively she is very much there, which is deeply reassuring. She has started eating mashed foods and is drinking fluids from a cup with my careful assistance, sometimes using a one-way valve straw. Physically, however, she is still very limited. She can only hold her torso upright (either leaning back or forward onto me) for less than a minute at a time. There is still no movement in her legs or toes and no knee reflexes, but there are movements in her arms and very, very slight movements in her fingers.

Friday 2 January saw Lola visiting Maya and bringing her ukulele to play Maya’s favourite tunes. Terry and I managed to step out of the hospital for an hour. We forgot to take photos of Lola playing tunes on ukulele and guitar but here is a recording of Lola playing the piano.

https://share.icloud.com/photos/01aFVA3WARE4lCVFRd-Dz3acA

Saturday 3 January was an exciting and emotional revelation day. Maya showed me she could still read just like she always did. Using every ounce of her energy, she read aloud—quietly, softly, each word clearly costing her effort. Her voice is so gentle it feels as though she is expending enormous energy just to speak. She read all her personal messages from friends dating back to 11 November 2025 (which I hadn’t opened) and gestured proudly, clearly chuffed by the love she received.

She FaceTimed her best friend Charlie. Although she could only manage a few words, everyone felt elated. Charlie was so happy to see her smiling, steroid-filled moon face and all. Maya also FaceTimed her home-ed teacher Sue C and the grannies. It was also a day of experimental eating beyond custard and gravy: chicken soup, mashed potato with gravy, and ice cream!

Sunday 4 January began with Maya saying, as soon as she opened her eyes, “I wanna go home.” And when the day nurse arrived, “I wanna go out.” Both the nurse and HCA were moved to tears. This day was monumental—Maya was allowed out for the first time in two months since her CAR-T infusion. I took her to the Brunswick Centre for fresh air. She asked to go to Waitrose for mango, and we went to Truedan for bubble tea. Big brother Enzo (sibling #3) came to visit too.

Maya requested roast chicken with broccoli stems and carrots, all finely chopped. Her appetite has truly increased—she even screamed for popcorn! Unfortunately, her chewing and tongue strength aren’t back yet, and her swollen face makes jaw movement difficult, so popcorn is still unsafe. I promised her a popcorn-flavoured milkshake from Slim Chickens next time instead.

Monday 5 January meant physio at the gym (2nd floor). The physios worked her hard on core strength. Maya was unimpressed—tearful, even—but this work is vital for her recovery.

Tuesday 6 January brought more physio at the gym, followed by visits from Nanny Dora and Auntie Ruth. Maya requested a trip to Slim Chickens. She didn’t eat the food, but I gave in to the popcorn-flavoured milkshake—our ongoing compromise.

Unfortunately, later that day she spiked a temperature and was started again on broad-spectrum antibiotics, antifungals, and antivirals to cover all bases for possible sepsis. Blood cultures were taken from both her PICC line and her port.

Wednesday 7 January included an arts and crafts parcel from our friend Anne Cole, a shower with OT, music therapy, bedazzled lip gloss from our neighbour Sophie (next-door cubicle), and—finally—a much-needed manicure and pedicure.

Thursday 8 January brought slime with the Play Team, pet therapy with Dr Teddy the dog, fresh air at the Brunswick Centre, mango shopping and bubble tea (obligatory), “Deep Blue Sea” story time with hospital school teachers Clara and Anthea, cottage pie for lunch, physio at the gym, and another hour outside.

Friday 9 January was a big medical day: NBM from 7:30am, medi-bike, finger painting, then theatre under general anaesthetic for a bone marrow biopsy and trephine (BMAT) and lumbar puncture (LP). She later had visits from friends Amanda and her science teacher Eleanor and her husband Barn (the drummer). The day ended with UNO card games with Daddy.

Saturday and Sunday (

10–11 January) were for rest and family time. Lola came on Saturday and played guitar for Maya and UNO card game. Sunday brought big brother Jerome and girlfriend Sophie, Nanny Dora, and Grandad Mike.

Maya is well supported by the MDT at GOSH—physio, OT, SALT, dietitian, and hospital school—but each team typically spends 30–60 minutes with her on weekdays. The rest of her rehabilitation, stimulation, and daily recovery falls to me, day and night. It currently takes me over an hour to feed Maya two Weetabix with banana and warm milk (250 ml). Lunch and supper can take up to 2.5 hours: roast chicken with mashed potatoes and gravy, mashed broccoli and carrots, followed by brownie and custard or peach slices and ice cream. In between, she asks for mango, mochi ice cream, crème caramel, bao buns, and bubble tea.

I also provide full personal care, including nappy changes 6–8 times a day. Transfers between bed and wheelchair require hoisting, which means waiting for nurses or HCAs to be available.

Treatment-wise, we’ve been told the neuroblastoma has reduced in size, which is positive. She is due for another bone marrow biopsy and lumbar puncture this Friday, and an MRI head scan on 11 February. Prognosis remains uncertain.

The crash calls on the ward still trigger intense palpitations in me—once or twice a day. Recently, we heard of a child dying on either the 5th or 6th floor (Lion Ward is on the 6th). It is not a pleasant existence in this surreal world. Yet every day, my heart is filled with gratitude that we still get time with Maya, considering everything she has endured.

The reality of our lives, however, is deeply depressing. We are constantly surrounded by families torn apart by childhood cancer, and there is the ever-present worry about finances. I try to look after myself by eating at least once a day and staying hydrated. I can no longer go swimming—Maya becomes extremely distressed when I leave the room. Not a night passes without tears: for the heartbreak in every cubicle, and because I miss my family and our pets at home—a home we are struggling to pay for.

I long for the mundane life: early mornings, going to work, complaining about traffic or supermarket queues. Life on Lion Ward is surreal. A children’s cancer ward is a daily reminder that the universe has not been kind to families like ours. And yet, gratitude remains—because Maya is recovering from ICANS, slowly, and although we don’t yet know how much of Maya we will get back, she is still here.

Thank you to everyone who has checked in. I’m OK — just completely consumed by Maya’s care from the moment she opens her eyes until she goes to sleep. We try to get out for fresh air most afternoons, but between hoisting, feeding and nappy changes, every day is intense.

It would be a disservice not to share Maya’s journey. Her strength, resilience and sheer grit are extraordinary. She keeps showing up, even when everything is stacked against her. We could not do this without the love, encouragement, sharing, and donations that keep us going — practically, emotionally, and financially. Every message, every share, every contribution truly matters. Thank you for walking this road with us.

To those that have asked:

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

Santander

Mrs D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey

You don’t always choose the battle — but you choose how you stand in it.

Thank you. Thank you. Thank you.