'It is so amazing what research can do': Meet Alyssa

When she was 12, she was diagnosed with T-cell acute lymphoblastic leukaemia.

She underwent chemotherapy and, later, a bone marrow transplant at her local hospital, but these sadly failed to cure her cancer.

Alyssa’s case was referred to GOSH, where a clinical trial for a research treatment was about to start. A trial that, for the first time, would use new technology to make Car T-cell therapy (a treatment with growing success in B-cell Leukaemia), suitable for T-cell leukaemia.

Alyssa received base-edited Car T-cells on 4 May 2022. She was the first person in the world to be treated with a therapy made in this way, and the first person in the world to try Car T-cell therapy for T-cell leukaemia.

Today she's doing well. She continues to have regular checks at GOSH and in Leicester and will receive life-long follow ups.

Now 15 years old, Alyssa tells her own story.

“I'm Alyssa. I live in Leicester with my mum, my dad, my brother and my dog Holly, who's a Labrador. She's very cute.

“I would describe myself as happy, a bit bossy - maybe more than a little bit.

“I like watching movies with my family and playing board games and card games. I love swimming, riding my bike, doing drawing and different arts and crafts and spending time with my brother Liam.

“It was 2021 and we had gone back to school after Easter. I’d always walked home from school, but I found it very hard to carry my bag, or some days I couldn't even walk home at all. And when I got home, I would eat and go straight to bed.

“I was just really tired all the time, and my parents thought that it was because we'd been in lockdown, so it was a big change going back into school. But I just kept getting worse and I didn't feel very well at all.”

After a few trips back and forth to the doctors, Alyssa was taken to A&E.

“We got called in to one of the back rooms, and by that point I really wasn't well, I felt like I couldn't breathe. It was just very scary.

“I can't really remember very much from that that time on. I got moved to intensive care and they ran all these tests – I had a bone marrow test done, and it came back that I had leukaemia - T-cell acute lymphoblastic leukaemia. Obviously, it was really, really scary for my parents. I was sedated at the time; I wasn't aware of anything.”

“When I woke up from being sedated my parents said, ‘Alyssa, you've got leukaemia. We're going to take you to the children's cancer ward’.”

“I started chemo, but we found out that it wasn't working as it should. They put me on some more intensive chemo, and it still wasn't working. It was a very scary time.

“Next, they started looking for a bone marrow donor. They tested my mum and dad and brother, but they weren’t a good match. We were looking on the list of people who had signed up to bone marrow donation. They were looking for quite a while and finally found one in America. It was a really good day; everything was looking up.”

Alyssa had the bone marrow transplant at a hospital in Sheffield, however it sadly didn't cure the cancer.

“When we went home, we found out that it hadn’t worked, my cancer was on the same level as it had been when I went in, it didn’t even bring it down a little bit.

“At that point, I was going to die. My mum and dad said, ‘This didn’t work, so the next option is palliative care and that will keep you alive for a few weeks or months, and we will try and find a trial for you to go on.’

“At first, we couldn’t find a trial for me to go on, and it was a very hard time for my parents and my brother. I was a bit in denial, ‘This isn’t happening, we are going to find a trial, everything is going to be fine’, whereas in reality it wasn’t. One of the things I really wanted was a dog, so when we couldn’t find a trial, they got Holly for me, which was absolutely amazing. We got her in a dark time, and it made everything much better.

“One of the things I said to my doctor in Sheffield was ‘Please don’t give up on me, I am not ready to die yet’.”

“Then our doctor at Sheffield found this trial at Great Ormond Street Hospital.

[A trial that, for the first time, would use new technology to make Car T-cell therapy (a treatment with growing success in B-cell Leukaemia), suitable for T-cell leukaemia.]

“We had tests done, bone marrow tests, lung function, x-rays, everything and a little bit more to make sure that I was eligible for the trial. I had 100% of the things that were needed to go to the trial, everything was looking good.

“They said ‘Alyssa, do you know what is going to happen in this trial?’. I said, ‘You take somebody’s cells, take some bits out, put some things in, and then you are going to put them into me, and those cells are going fight my cells’, they said ‘Yes, we couldn’t have explained it better!’.

“My parents gave me the choice, they didn’t want to make the decision for me because I had already been through so much. They presented it to me, I could either stay at home and live out my last few weeks in peace, or go into hospital for the trial - it might cure you, it might not, you might have to die in hospital. I said I wanted to do the trial, because if it didn’t help me, it would help other children. I would have helped somebody, that would have been my life purpose.

“We went home and about a week later they got back in touch and said ‘The trial has been approved, you can be the first person to come in for this trial’.

“Cell day was the day when I had my Car-T cells put in. They would hopefully kill the cancer, but also it was important because it was the first time that it had been done to anybody. It was a happy day. This treatment could save so many lives and it could save my life as well.”

“Everything  went really well, and I was in remission. I am so happy to be here right now. It’s not just that I can do all the things that I thought I was never going to be able to do again, but I can bring hope to other people. If I can go through this, you can too, hang in there and hopefully this will help so many people.

“I am cancer free now. It is so amazing that I am able to be here, and I am so grateful for everyone that worked so hard on this trial.

“There are so many people, from the cleaners to the scientists in the labs, without them I wouldn’t have been able to do it. It is so amazing what research can do.”

“I spent 16 weeks in GOSH, it seemed to fly by.

“As soon as you go in, you are welcomed by everyone, everyone is so happy and smiley. It was a very colourful place, a very cheerful place.

“As time went on, it got better. Even though I was stuck in my room by myself, it seemed the only reason the nurses were there was to make me smile. It was like they weren’t just there to treat us; they were there to be our friends as well.

“One of my favourite memories of GOSH has to be when I was first allowed out of my room. I didn’t know what to do, so the nurse and health care assistant did a scavenger hunt for me, I had to find things around the hospital - a picture of a flamingo, a flower or the Peter Pan sculpture outside - I had to go around the hospital looking for all these things. It has to be one of my favourite memories.

"It made me happy that so many people were there making my experience of the hospital better. They cared about me, as a person, so much. There are too many good memories to talk about.”

“Now I’m cancer free, I just hope to live a normal life, grow up, be a mum, a wife and grandmother. I am excited to finish school and get a job, hopefully in the NHS.

“In the future, my hopes for the treatment of childhood cancers are that there are more research trials. That is really important, not just for my diagnosis, but also for other people with other cancers. Research is so important, and without people donating towards research and people trying to find new things, so many lives would be lost.”