“She was the sunshine in our family.” Emily’s story, as told by her parents.

Posted in: Blogs, Children's stories, Informative, Uncategorized

This is the story of Emily Smith, a little girl who died of a brain tumour last year when she was just eight years-old. Her parents, Andy and Sarah Smith, have bravely shared their story in the hopes of raising awareness of brain tumours in children, and the work we’re doing at Tom’s Trust. The Tom’s Trust team would like to say a huge thank you to them for sharing their story with us.

Emily on a carousel Our eight-year-old daughter, Emily, was incredibly bright, creative and loved playing her piano. She was a graceful ballet dancer, talented at drama, hiking, swimming and climbing. She even conquered Snowdon on 1st June 2022 with boundless energy and enthusiasm. She was a kind friend to many and a loving daughter and sister to her older brother, Harry. She was the sunshine in our family.

At the end of July 2022 we first noticed that Emily was unable to use her right arm normally. It didn’t hurt and didn’t seem to be bothering her much to begin with. She just said it felt “unusual”. It was quite subtle and she could still do normal things. The next day, it was no better and had started to affect her right leg too. We called 111 and they arranged for us to attend our nearest hospital.  Although Emily’s symptoms were still quite mild, they decided to do an MRI scan that evening for some reassurance. They found a brain tumour. We were told Emily had none of the typical brain tumour symptoms, such as sickness and headaches, because of where her tumour was located.

Emily was then transferred to Addenbrooke’s in Cambridge and there was a plan for surgery to remove as much of the tumour as they could with post-op radiotherapy to slow the growth down. We were told the tumour was cancerous and in a really difficult part of the brain to get to. On the children’s ward, Emily could still walk with help and remained determined and independent, wanting to play in the garden on the ward and in the play room where we did some painting together, all the time waiting for her planned surgery due to take place at the end of the week. On the ward we were introduced to a Tom’s Trust Psychologist, Angela.

In hospital, Emily deteriorated very quickly as the tumour had started to bleed and swell. On 2nd August 2022, she collapsed and was rushed to theatre. Emily spent her remaining days on the Paediatric Intensive Care Unit and never woke up after her surgery. She died in our arms on the 8th August 2022. Nothing anyone could have done would have changed Emily’s outcome ultimately because of the type of tumour that she had. A Diffuse Midline Glioma currently has no cure.

Since Emily’s admission to hospital, and weekly ever since, we have been getting great support from Angela. It helps that Angela had met Emily on the ward before she died and also spent time with us both, and Harry, before Emily’s collapse.

Angela has been the most amazing support to us throughout the worst time of our lives, helping us try to bear the unbearable loss of our daughter. Angela has helped us both understand grief and how we can learn to live alongside our love and grief for Emily as we navigate life without her. She has worked with us to help process the traumatic events around Emily’s rapid decline and has spent much needed time with Harry too. He trusts her and can talk to her and she really understands him. We are truly grateful to Tom’s Trust for identifying the need for mental health support for children and families affected by brain tumours. We don’t know how we could have faced this without your help. We want you all at Tom’s Trust to know that Tom’s legacy lives on through the support that Angela gives us. So, simply, thank you. 💛

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