Toby’s Story

In early 2022, Toby seemed to be unwell all the time.

He’d had Covid at New Year and seemed to be having trouble shifting it.

He had a fever every other day and he kept getting sent home from preschool because of his temperatures. He was getting lots more bruises than usual that were in strange places. He was complaining of leg pain and refusing to walk. He was getting increasingly tired and one day he fell asleep in the garden at preschool!

After waking him up one day to discover he had a pin prick rash that wouldn’t fade with the glass test, I rushed him to our local children’s A&E fearing that he had meningitis.

It turned out that he actually had Acute Lymphoblastic Leukaemia. He was 4 when he was diagnosed.

He was transferred to Bristol and as there were still Covid restrictions in place, the children’s oncology ward had even stricter rules due to the increased risk for the patients on the ward. This meant that the playroom was closed and we had to stay in the room all the time. We were extremely restricted in what we could do, so there was a lot of time spent on tablets and watching TV.

One day, I noticed a poster about a virtual storytelling session that was being arranged by Read for Good. I’d never heard of Read for Good before but I thought it would make a change and give us something different to do so I signed us up. Toby has always enjoyed stories for as long as I can remember and loves nothing more than choosing a book and snuggling up with one of his favourite grown-ups to listen to a story. He could even recite his favourite ones word for word from as soon as he could talk in sentences.

After being discharged from Bristol his treatment has continued, mainly as an outpatient at Gloucester. If he has an emergency admission due to an infection, this care also takes place at Gloucester. It is here that we first met our fabulous storyteller, Michael.

One admission, Toby was in bed because he wasn’t feeling well when there was a knock at the door. It was Michael who had come to ask if Toby would like to listen to a story. Toby said that he did, and before we knew it, Michael was wheeling a huge, bright orange trolley into the room that was laden with books! Toby sat bolt upright, staring at all the books on the trolley.

Michael spent a little bit of time finding out about Toby such as what his interests were and how old he was, he then had a little look through the book selection and pulled out a couple of different choices for Toby. Toby selected one and Michael began to read. But Michael didn’t just read the story, he acted it out, he did lots of crazy voices, he asked Toby questions about what might happen next or what had happened earlier in the story. Toby was thoroughly engaged with the whole storytelling experience and couldn’t believe it when Michael said we could keep the book at the end!

Seeing Toby get so involved in the story and so animated whilst listening was so heartwarming. Before Michael arrived he had been sleeping most of the time while his body and the antibiotics were fighting the infection, so seeing him looking so happy and lively brought a tear to my eye. Having someone come into the room who is not connected to any medical procedures and is there purely to spread joy is wonderful.

It makes a huge difference to me as a parent as well as to Toby. When we are having overnight stays at the hospital I’m usually tired from being woken through the night by nurses coming to do observations or helping Toby to the toilet when he can’t manage by himself, not to mention the worry of being with your sick child and the discomfort of sleeping away from home. All of that makes it very challenging to be upbeat and provide entertainment for your child throughout their waking moments. Having someone as enthusiastic and creative as Michael come into the room boosts me as well as Toby.

Along with the play team and his fellow patients, Michael is one of Toby’s favourite people to see at the hospital. He loves it when the book trolley arrives on the ward because he knows he’s about to get some one to one entertainment.

Thank you Read for Good and everyone involved in making it possible.

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Nikki Knight

Blogger and Toby’s Mum

To find out more about Toby’s fight against leukaemia, please visit their website and social media using the links below:

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