Daisy-May's Story

On the 26th of December 2021 at 12.30am I heard my daughter being sick, she had been poorly for a week prior, I went in her room to see her and there was dark brown goo over her, I knew this wasn't good.

I woke my husband up and said we need to go to A&E, when we got there she was still spiking a fever, and was sick again, they took bloods from her, and she had no red or white blood cells, and no platelets, we were told ita either leukaemia or HLH, we hadn't heard of HLH like most people haven't, either way we were told she was seriously ill.

We were then told she needed to go to Bristol children's hospital, where they could look after her. Most of that day was a blur, I had been running on hardly any sleep, when the ambulance came to transfer her, we were told she will be going straight to intensive care, and the real kicker was that I couldn't travel with her due to covid, at that moment I fell apart, and I wailed. I've only cried like that twice in my life before.

At 22 months old, on her own with a team of people she didn't know, in a specialist ambulance she was blue lighted to Bristol children's hospital, we followed, Our girl managed to stay out of ICU, but was put on the HDU ward, we were told that it wasn't leukaemia but HLH, which stands for Hemophagocytic Lymphohistiocytosis. They started her on etopiside Chemo and steroids.

We didn't know if it was primary or secondary, at that point, she had to have screening done by GOSH, we were eventually told it was primary which meant she needed to have a Bone marrow transplant.

We nearly lost her several times through HLH and the bone marrow transplant, she had so many infections, she was in Bristol Children's hospital for one week short of a year.

She was on TPN for 6 months, because she got GVHD stage 4i, she was then put on PEG as she continued to heal. She continues to make good progress.

We thanks BSF for this much needed break away.