When Claire’s little girl was diagnosed with Burkitt’s Lymphoma, a rare form of blood cancer, it shook her world. For the next several months, Starlight Ward became home for both Niamh and Claire – and the familiar faces of the doctors, nurses, play staff, porters and cleaners became like family.
“Initially, the absolute shock of the diagnosis means that you are just carried along while everything moves incredibly fast around you.
You have to hand over your child and your trust to people you have only just met, and my overriding thought was that they needed to know her. I wanted them to know how magical she is, what she likes, doesn’t like, what makes her special. If it was all going to go wrong, then I needed them to know her and love her in the time she had.
I think the greatest evidence of what a truly incredible place Bristol Children’s Hospital is, particularly Starlight Ward, is how much we miss it. It might sound strange, but the people who work there managed to make it feel like home from day one.
The entire team made us feel safe and cared for every minute we were there. There were so many times when staff went far beyond the call of duty to care for both Niamh and I; a much-needed hug, a cup of tea at three in the morning, making beautiful stickers for her dressings, acting out Frozen with full commitment, letting her help decorate the Christmas tree, massaging her feet and what she talks about with most fondness: when they let her be ‘nurse in charge’ for the day.
Claire, Niamh’s mum
“We could not have asked to be anywhere better during the darkest time of our life.”
Sian, the play assistant on Starlight, did incredible work with Niamh. Claire and her music therapy taught us techniques we used to manage our big feelings at home.
Niamh also got to make some beautiful Christmas decorations with a local artist who came to visit. When she was able to leave her room, she loved to go for walks and look at the gorgeous murals on the walls. I even got to enjoy a Reiki session once a week – it helped to ground me on those particularly hard days.
Claire, Niamh’s mum
“We can’t thank The Grand Appeal enough for making those things available to us because they truly are invaluable.”
Watching Niamh ringing the bell was incredibly emotional. During our stay we’d seen children ring the bell so I had some idea of what to expect, but nothing can prepare you for the huge wave of emotion when it’s your own child.
I had expected to feel joy, and I did, but in lots of ways it was the end of an era. The grief that came with that was immense, not to mention all those back-of-your-mind thoughts about never seeing this day. It was complicated, but ultimately my greatest feeling was pride in Niamh and unspeakable gratitude to the people who made it possible for her to ring the bell at all.
Niamh is such a strong girl. She was fierce, independent and bold before cancer came into her life and treatment has done nothing to diminish that fighting spirit. Watching her keep putting one foot in front of the other with a big smile on her face really does inspire us all. We always say she’s twinkly on the outside, tyrannosaurus on the inside!
She’s doing so well, now. She has completed treatment and our main focus now is on recovering from the effects of cancer and the treatment. She is so determined to bounce back that she was straight back to ballet as soon as she was discharged from hospital!
It was so hard to say goodbye and we relish every opportunity we have to pop back in and see all those faces again. Everyone was wonderful in their own way but Doctors Sarah, Emma, Tommy, Amy and (‘tiny!’) Sarah will live in my heart forever, not just for saving, but for truly caring for my lovely girl.
‘Purple Sophie’ who is an absolute angel.
Morgan, Emily, Sophie, Annabel and the rest of Niamh’s ‘Sparkly Girls Club’ are the most wonderful women and we love them so much.
Lucy, our physio, who is made of literal magic and, of course, Sian who walked Niamh through so many traumatic days and made sure there was so much fun in her life.
They will all be family to us, forever.”
Will you help more children like Niamh?