Lexi's letter
While most teenagers enjoy spending time with their friends, gaining their own independence and learning who they are as a person, the reality can be very different for those undergoing a stem cell transplant.
Many young people who need a stem cell transplant spend long periods in isolation, often with only a parent or caregiver for company. They experience complex conversations filled with medical language and encounter a wide range of healthcare professionals throughout their journey.
This was the case for Lexi, who was 13 years old when she had her stem cell transplant. Unfortunately, Lexi’s transplant journey wasn’t smooth. She endured a prolonged stay in hospital and required further treatment for graft versus host disease (GvHD) – when your new immune system harms some of the cells in your body because it sees them as ‘different.’
Lexi met many different specialist teams during long stays in her local hospital and transplant centre. Whilst overall Lexi’s experience of care was very positive, at times she felt left out of conversations and was unsure of what was being discussed.
Lexi decided to write a letter to healthcare professionals
When Lexi was discharged, she wanted to do something to help healthcare professionals understand how it feels to be a teenager in hospital, and the small things they could do to help make the experience a little bit better for them.
That’s when she decided to write them a letter, which she gave to the team at her specialist hospital. Lexi, with encouragement from the team and together with her family and Touch Design, turned the letter into an educational resource, which includes a pdf document and an animation.
Lexi’s mum, Liz, said: “This gave Lexi an amazing opportunity: to be the creative director as her words were given a visual representation. She started by building a mood board of animation styles and colours that she liked, which the team made into a couple of options. Once Lexi had chosen, the team started developing the animation. All of this happened whilst Lexi was readmitted to hospital for yet more treatment, and was something that she really enjoyed doing.
“Lexi died in hospital on 3rd September 2025. She didn’t get to see the whole animation completely finished, but she saw the first half after a heroic effort by the team. The day before she died, she watched it quietly and nodded. 'That’s good,' she said.
“As we continue to grapple with our grief, I am so grateful for Lexi’s Letter. It was finally completed and voiced by Lexi’s younger sister Ella, and now stands as a lasting legacy for us all. We’re grateful to have a way to share Lexi’s views and experiences with people, and it’s wonderful to hear the impact it has when people watch it.”
Lexi's letter - animation
Lexi's impact
A number of NHS Trusts are already using Lexi’s Letter in their education of new medical, nursing and allied health professionals.
In addition to using Lexi’s Letter in our own training, Anthony Nolan’s Patient Services team are sharing Lexi’s Letter with as many healthcare professionals as possible.
Karen Nicholson, children and young people clinical nurse specialist at Anthony Nolan, presented Lexi’s Letter at The Children & Young People's Cancer Association conference, and most recently at the EBMT’s 52nd Annual Meeting – one of the world’s largest stem cell transplant conferences.
We hope by sharing Lexi’s story, letter and animation we can help make Lexi’s wish a reality and improve the experience of teenagers and young people going through treatment.
Further resources
For further Lexi’s Letter resources visit: linkedin.com/showcase/lexisletter/
We’re here to help patients before, during and after their stem cell transplant or CAR T-cell therapy. Find out more about the information, advice and support our Patient Services team offers.
Lexi's letter in full
Lexi's Letter
Dear Healthcare Professional,
When you spend time with me, please remember:
- Tell me what job you do and why you are in my room, even if you have a badge or you have been in before. I see a lot of healthcare professionals.
- You talk about this topic all the time, but it might be the only time I will have this conversation.
- Ask me how I like to communicate, be told information, what I like to be called and how I want to be told difficult news if there is any.
- You know more about the medical side of things, but I am the expert on me and my story. I have had many experiences in hospital over many years, some positive, some scary, some painful. All of these experiences are with me now.
- Don't talk about me to others in the room without including me.
- I can only have one conversation at once, especially if you are telling me complex information or instructions.
- Things which are normal for you might be strange or scary for me; I might never have heard of them before or only have half-knowledge about them.
- Before making a decision, I might need time to digest information and ask questions.
- To check I understand, ask me to explain back to you what I think is happening, or about to happen, to me.
- My time in hospital affects me medically, socially, and psychologically. Please try to consider all three aspects together.
- I might seem OK, even be laughing and smiling, but I might not be OK.
- I have interests, passions, likes and dislikes, just like you. Ask me about them or look around me for clues. Maybe share something about yourself.
- I might feel self-conscious about my body, especially if it has changed through treatment or I need personal care from you. I might feel a loss of dignity, or embarrassed by not being able to look after myself.
- Hospitals are loud, scary, bright, stuffy, clinical and strange places. You go home and have a break from it. I'm surrounded by it all the time, day and night.
- It's OK to laugh and joke; take your cue from me whether it's time for fun or time to be serious.
- I can feel stuck in a system I don't understand and I'm often waiting for information or for the next stage in my treatment. When you leave me room, please tell me what will happen next, and when.
Thank you for all of your expertise, your care and your commitment to the wellbeing of your patients, even when I'm grumpy.
From Lexi