Northern Ireland

Cancer storybook Eva Meets Dr Mac aims to explain the disease's language

Eva and Dr Mac
Image caption Tracy Hughes reading from Eva Meets Dr Mac to a group including Lauren, who has stage four high-risk neuroblastoma

It's the storybook with a twist - but, according to a 14-year-old girl with a rare form a cancer, it could make all the difference to young people like her.

In 2018, Lauren was diagnosed with stage four high-risk neuroblastoma. She is just one of three children in Northern Ireland living with the condition.

She told BBC News NI it's vital young patients understand cancer language - words like chemotherapy, bone marrow transplant and Hickman line.

That's where the book, Eva Meets Dr Mac, comes in.

It was written by Tracy Hughes after her niece died from a brain tumour in 2015.

The author said she came up with the idea after Eva, who was undergoing chemotherapy, couldn't understand why her hair couldn't be stuck on again.

Image caption The book seeks to explain words that are commonly used in cancer treatment

"I just made up stories about the character, who I called Hair, and Hair's adventures and all the exciting places it would go - it brought some laughter in times of tremendous heartache."

A teacher, it was Tracy's pupils who encouraged her to produce the book after Eva passed away.

"Eva found it really tough. I had worked part-time as a hairdresser and she thought I could just put her hair back in again.

"So when I started telling her the tall tales about Hair's adventure, she got caught up in all the magic and was happy to buy into the adventures during our story time together."

She added: "I see this book as a tool, a resource to help other children experiencing cancer and their siblings and parents understand what is going on."

Image caption Tracy Hughes wrote the book after using stories to help her niece

According to Lauren, from Newry, it's wrong to presume older children don't need to know or understand what is happening to their bodies.

Instead, she said, knowledge can help them understand what lies ahead.

She recalled how, within a half hour of being diagnosed, she was given a treatment plan full of big words that made little or no sense.

"That was last year - now I have had 80 days of chemotherapy split into eight rounds and then I had major seven-hour surgery to remove a tumour," she explained.

"Then I had my stem cells taken out of my body, also a high dose of chemotherapy to kill all the cells and to make sure there was no cancer left."

Image caption Lauren said she hoped many young people would benefit from the book

This led into three weeks of radiotherapy and five rounds of immunotherapy, a regime she is halfway through.

Lauren said she coped by focusing on the positive and being around her three older brothers and sisters, as well as by helping other children on the ward understand how chemotherapy will affect them.

"Chemotherapy makes you feel different - some people throw up, you also lose your hair.

"But you just don't feel like you. You are just the ghost of you, who has to do this but will come back again."

The demand for this kind of clear information is rising, according to Raphael O'Connor, the residential service manager for Cancer Fund for Children.

"This book helps children communicate in an easy way, through its storytelling and by explaining that journey by using words that will become familiar to them."

She said the book will be "incredibly useful" in Cancer Fund for Children's Daisy Lodge facility, a short-break centre used by families affected by cancer.

Meanwhile, the author said she would like the book to be available in every paediatric cancer hospital around the world.

"Like Eva, I aim big and everything her family does is in her memory. She has a legacy and her life was meaningful," said Tracy.

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