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Katie: The Princess and the Ribbon

Katie's story - by Joyce, her mum...

Please be aware that this is a very emotive story.

It was in the October when my Katie, who we nicknamed ‘Princess’, first showed signs of her illness – her lazy eye being dismissed as a squint by doctors.

In March the following year, Katie went for an MRI scan. That night we got a call from Queen Elizabeth Hospital asking us to go back the next day. After spending the day there and talking to many different doctors, we were then told to go home and await a call from another hospital. That call came early that Friday evening and we were asked to take Katie to Addenbrookes the following Monday. It wasn’t until the Wednesday that she had to endure three and a half hours of body scanning.

Following these tests, the neurosurgeon called us in to break the devastating news - Katie had an inoperable brain tumour.

She bravely underwent a harrowing round of Radiotherapy, with a view to prolonging her life. Amazingly she found the courage to say no to anaesthetic and be conscious for much of it. Although she was alone in the room she linked herself to us by clutching a length of ribbon - Katie’s dad Kelvin and I held the other end so tightly.

The tumour took her life just eight months later aged five, and the name ‘princess’ was on all of our minds as she was taken to her funeral service in a white carriage, dressed in her favourite sleeping beauty outfit.

How EACH helped our princess and family...

We were told about our local EACH hospice two months into Katie’s radiotherapy, and started receiving care and support from then on.

We received care at the hospice itself as well as receiving support in the family home – I am a self confessed ‘home-bird’ and receiving care at home just felt right. It was what we needed as a family, and EACH delivered what we wanted.

We were able to develop strong relationships with their nursing staff as they helped look after Katie throughout her final days and nights. For me it was nice to have them around, especially in the morning after grabbing a few hours sleep. It was difficult for me because I wanted to be there every second with Katie but I soon realised it was impossible – surviving on three hours sleep a night wasn’t the answer and I just couldn’t function properly – not good for me, not good for Katie.

Katie soldiered through months of unbearable pain and spent the last eight weeks bed-bound. Throughout that time, Katie would be visited three times a week by EACH’s specialist play staff. They would come with arts, crafts, games and activities. 'Lazy Lou’ became the pet name for Katie’s left arm, often paralysed as a result of the tumour.

She became frustrated at having to do things with one hand but soon amassed a stack of fantastically decorated plates, cups and special artwork with the help of EACH staff – items we now treasure.

All this allowed me time to take a breather and a break from the regime of Katie’s medication. It let me do some normal stuff – stuff we all take for granted, such as a walk in the fresh air, a shopping trip or just watching TV on the sofa.

As well as home care, Katie benefited from three weekend stays at the hospice – we all stayed, including Katie’s brothers. We particularly enjoyed a special bowling day with other children staying that weekend. Katie became very attached to the piano in the Music Therapy room and developed a close friendship with one of the other children there – talking to someone in a similar situation really helped her. Her friend told her that “everyone is different” – simple words that seemed to help Katie so much.

An important thing was how the staff were so fantastic with Matthew and Declan, Katie’s siblings. It wasn’t just quality time for Katie, my other children had special time too – so important at such a confusing time for us all.

I also found huge comfort in the fact that the EACH Family Support team started working with us from the outset. It was a great reassurance that while Katie was alive we were able to build strong relationships with those who would be supporting us over the coming years.

Our Support Practitioner continues to visit us at home once a month, as well as involving us in their bereavement group sessions with other families. In between those times, I know they are only a telephone call away.

This September, we all returned to the hospice for our first EACH memory day, a special day the hospice organises every year to allow bereaved families to get together and celebrate their child’s life. I have to say it hurt like hell but gave me an opportunity to have a good long cry, around people that understand. I was so pleased I went and it’s a day I will definitely look forward to in the future.

My biggest fear is that people will forget Katie. I hope that by telling her story this won’t happen and I can inform other families about the services EACH provide. I also hope it will encourage the public to continue supporting this wonderful and vital charity.