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Emily's Story

Emily's family visited the Cotswolds in November 2023.

Emily kept getting back to back colds/ viruses in the winter of 2018. She was just coming up to 10 months old in December 2018 when she really wasn’t right one morning, we rung 111 who sent us to out of hours gp. They didn’t think much was wrong but sent us to the ward just to be sure. They decided there it was worth doing a blood test as she looked pale/ was very lethargic. About an hour later we had the devastating news out 10 month old daughter had leukaemia 😢

A very long difficult week of testing followed where they couldn’t quite decide if she did or didn’t have leukaemia as she didn’t present with the ‘usual’ symptoms but on 23rd December 2018 the bone marrow results came back - she had infant acute lymphoblastic leukaemia with MLL rearrangement which made it more difficult to treat.

Our world just fell apart. She started instantly on a high dose chemo regime. What followed was 9 months pretty much all inpatient having back to back high dose rounds. She had sepsis, a fungal lung infection and many other set backs but she managed to get through each round. By the end of the high dose rounds she needed to have a Mickey button placed for feeds as she had gained no weight between 10 and 20 months old.

We finally came home on maintenance chemo at the end of 2019 and just as we started to settle into a routine we went into lockdown and we needed to shield with her. By the time she finally finished her treatment in December 2020 she had never played with another child and we had never had the opportunity to do anything as a family of 4. Her older brother Will was by her side throughout.

It takes a long time after treatment to start putting the pieces of your life back together, and the long term effects of the chemo are always there. She had so much chemo at such a young age, we found out earlier this year that the chemo had caused her to lose her hearing and she is now moderately deaf ☹️

We try and take every chance we have as a family to make the most of the time we have together after spending so many months apart in hospital and so long being unable to do things when Emily was so vulnerable.

Huge thank you to BSF for giving us the chance to spend a lovely weekend together in the Cotswolds we are really looking forward to it!

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