Tilly’s story

Three-year-old Tilly is one of life’s little sparks. She has an infectious laugh and a smile that can light up a room.

Tilly’s mum, Liz, first noticed that something wasn’t quite right last summer. Tilly, a triplet to twin brothers, Arthur and George, had developed a slight limp that seemed to come and go. As it didn’t seem anything too worrying at first, life carried on. Tilly started school that September, and while her appetite dipped and she lost a little weight, she was otherwise her bright, happy self.

But by Christmas, the limp had got worse. Having tried to rationalise her fears as normal parental worry, Liz was now sure that something really was wrong.

Early in the new year, Tilly was referred for an x-ray. By this point, she had also begun to complain of pain and was experiencing night sweats. Soon after the x-ray, the hospital called with urgent questions: Had Tilly been in a car accident? A rollercoaster? Anything high impact? They said it looked like she had a fractured hip.

Over the following days Tilly was sent for blood tests and MRI scans. Finally, Liz and her husband Stuart were called into a side room at the hospital. Liz remembers turning to Stuart, saying: “I think this is going to be bigger than we thought it was going to be.”

The scans had revealed lesions on Tilly’s hip but also a primary tumour the size of a grapefruit on her left kidney. On January 9th, just days later, the family received the most devistating news: Tilly high-risk stage 4 neuroblastoma.

Liz remembers seeing the scans for the first time. She says: “The tumour took up so much space on her side. Given how little she was, it was frightening.”

Tilly’s started eight gruelling rounds of chemotherapy that very afternoon. She would have them in ten days bouts, totalling 80 days in all. She became an inpatient, separated from her brothers. The family were suddenly forced to navigate a new reality with Liz staying in hospital with Tilly while Arthur and George stayed at home with their dad, missing their sister terribly.

Surgery in April removed 95% of the tumour, but a small part remains as it was too close to a major artery to be safely taken out. Tilly has now completed high-dose chemotherapy and received a stem cell transplant.

It’s been more than 150 days since Tilly was diagnosis with 112 of those spent in hospital.

But despite the clinical environment, the team on Rainbow ward do their best to make sure that Tilly gets to enjoy as many normal childhood experiences as possible. Sparkle co-ordinator, Emily, helps make sure that Tilly still gets to have fun and celebrate special days like Mother’s Day and Pancake Day, while the play team have been instrumental in keeping her happy and entertained, especially during her time in isolation. Play specialists Allison and Catrin have also played a key role in helping to prepare Tilly for procedures that could otherwise feel very scary for such a little girl. They use age-appropriate play to explain medical procedures to Tilly so she understands what to expect and feels less out of control.

Next month, Tilly will travel to London for a month of daily proton beam therapy, which she’ll need a general anaesthetic for each time. Ten days later, she’ll begin six months of immunotherapy, which will take her treatment journey into January – a full year since her diagnosis.

Liz said: “Despite it all, Noah’s Ark is such a special place. The teams truly go above and beyond for your child and the whole family. When Tilly is well enough, it’s so nice to have the boys here too to feel like a family again.”