She had one eye removed and replaced with a glass eye. Surgeons managed to save her other eye, but not her sight. She is completely blind. Mum Tammy tells her story:
Tehya absolutely adores Julia’s House. When she hears the voices of her nurses and carers she puts her arms out – she just loves snuggling up with them.
Coming to the hospice and spending time playing and singing has done her the power of good. It has really brought her out of herself and made her so much more confident – and Tehya needs that confidence because she is almost blind.
She was a tiny little thing when she was born – just 3lb 10oz, even though she was a full-term baby. One day when I was bathing her and because of the way the light was shining on her eyes, one of her pupils looked see-through instead of black. It was really odd.
I told the health visitor and luckily she had read about something similar and flagged it up. We went to see an eye specialist in London who diagnosed a retinoblastoma – cancer of the retina.
Tehya also has a rare genetic condition which affects her growth, breathing and muscles. It is thought that may have also been the trigger for her cancer.
She had to have her eye removed and a glass eye fitted. It was traumatic and I felt completely numb but I was just so glad she was alive. I still had Tehya and that was all that mattered.
Then they found a tumour in the second eye – she had laser therapy and then chemotherapy directly into her eye. Because it was discovered early they managed to save the eye but unfortunately they couldn’t save her sight.
This can cause real issues with her sleeping. She can’t tell day from night so can be awake all hours of night or sleep in during the day just when I need to get her seven year old sister Talee to school.
I have a strict routine so that she knows when it is time to sleep, time to get up, but even then the days and nights can get very mixed up. One of the ways I get Tehya up in the morning is to narrate the day ahead.
I tell her when we are going to do, who we are going to see and turn the day into a story – which is probably why she loves books being read to her. She gets very excited if Julia’s House is going to be part of her day.
It sounds crazy now, but I didn’t want any help from Julia’s House when it was first offered. I felt no one could look after Tehya like I could. I wanted to do everything for her myself.
One of the nurses came for a home visit and to have a chat was so helpful. I started to feel very excited about getting some support. The more I heard about Julia’s House the more I thought ‘this is the place for Teyha’.
After everything she went through she became very wary of people even touching her – she associated touch with having some horrible medical procedure – now she loves her cuddles with the care team.
Tehya is such a smiley, happy girl. Her face lights up when she knows she going to the hospice because it is like a home from home, warm and welcoming and the staff are lovely. They don’t just give me a break and help Tehya, they support Talee too. Talee is very protective of her sister and can get upset if people make comments. Someone at school once said: ‘Are you blind or something?’ which made her very cross and she spoke out and told everyone how hurtful that was.
Despite this Talee isn’t that confident. At first she felt too shy to go to sibling’s days but Maria, the Sibling Co-ordinator was very understanding and encouraged her to bring a friend along until she got to know a few people.
Both Tehya and Talee have blossomed with the support of Julia’s House. It has helped me to be more outgoing too. I didn’t realise how entrenched I had become in my role as a carer. I had stopped feeling like a person in my own right.
Now I look forward to my doing more with my breaks from caring – I am even hoping to pick up an old hobby and go riding again.
Anyone thinking of becoming a paediatric nurse or changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.
There is so much more to look forward to for all of us now that Julia's House is part of our family!