In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Alice Rose Johnson
Alice Johnson, of Sheringham in Norfolk, was diagnosed with a high-grade ependymoma, aged three, in September 2001 after experiencing symptoms including tiredness, sensitivity to sounds, headaches and dizziness. She underwent surgery and chemotherapy after which she quickly regained strength and energy. However, over the following 21 years she endured a further five surgeries, chemotherapy and three courses of radiotherapy. Having exhausted all of her treatment options, she died in July 2022 at the age of 24.
Here is Alice’s story, as told by her father Stephen …
We moved from a one-bedroom flat in South East London to a huge Victorian house in Sheringham in 1997. My wife, Jennie, fell pregnant within about three months of us moving and our daughter Alice was born in March 1998. She was beautiful, with curly blonde hair, and she loved the seaside. She enjoyed playing in the dirt and was a really lovely, fun girl to be around.
“Over a period of about six months, Alice started lacking energy and she wanted to lie down a lot.”
She became sensitive to sounds and started getting really tired. We’d planned a holiday to Euro Disney and were hoping she’d pick up, but she seemed to be getting worse and was complaining of headaches and dizziness. Then in September 2001 she wet herself whilst on the settee.
We were very worried and took her to the doctor, who was concerned enough to refer her to Norfolk and Norwich University Hospital. There they did a number of tests, including a CT scan, which led to us being taken into a darkened room with a handful of doctors.
“They gave us the devastating news our three-year-old daughter had a brain tumour and that’s when the journey really started for us.”
The next day, we were taken by ambulance to Great Ormond Street Hospital (GOSH) in London. It was strange to find ourselves back in London with our world turned upside down, but things moved very quickly after we arrived. They started Alice on treatment straight away, giving her steroids to reduce the swelling in her brain and scheduling her for an operation. She was in theatre for a good 10 hours and then in recovery for a further two.
“After the op, she regained strength and energy and bounced back fairly quickly, which was a huge relief.”
Radiotherapy wasn’t an option because Alice was so young that the risk to her developing brain was too great. Instead, we were transferred to Addenbrooke’s Hospital in Cambridge for her to start chemotherapy. Medically, we felt like we were being looked after and, because of that, we decided not to do a lot of research into her tumour. We concerned ourselves with Alice and tried to keep things as normal as possible for her.
“She had almost no hair going into primary school.”
I remember her looking in the mirror, with a ribbon in what was left, saying: ‘My hair looks funny’. We didn’t tell her she had a life-threatening condition but rather that she needed some medicine. This was borne out in later years when she realised the seriousness of her situation and we did then wonder if maybe we should have told her more.
In Alice’s early years it was easier because we just bounced her along and she liked the attention of the doctors and nurses. She started gaming after discovering consoles in hospital and that became one of a number of interests for her. She missed out on a lot of school, but eventually things started to settle down again. We had a period where her hair had grown back, she was feeling better and we were able to return to a normal life.
When her tumour came back at the age of seven we were shocked, despite knowing that was a possibility. We’d been told there could be a better plan of action next time and there was with the prospect of radiotherapy, the thing we were told would stop the cancer. Alice had another debulking surgery, this time at Addenbrooke’s, and bounced back again before embarking on radiotherapy, but she did suffer side-effects.
“As well as developing a squint, the impact of the radiation and chemo was that she didn’t do well academically, which had a knock-on effect on her social life at school.”
When it returned again in 2010, we were worried the surgeons wouldn’t operate, but they did. Alice was also given a more targeted radiotherapy and she was fine until 2018. That period of calm was a really wonderful time. I remember photographing Alice receiving an award at a Girl Guides meeting looking so healthy. I wanted others going through a similar ordeal to see the photo and feel hopeful about being able to pull through illness, so I put it up in Addenbrooke’s C2 ward.
“I wanted people to see how our very sick child had developed into a beautiful active girl and it had all been worthwhile.”
We were fortunate to be better off than a lot of people and, although we would have looked after Alice regardless, she wanted to work at Tesco where she had a vision of manning the bakery. Through her school, she managed to get taken on for work experience and she volunteered for the supermarket for about nine months before applying for full-time paid work when she turned 18. She also volunteered for the British Heart Foundation, working in its sorting room.
One day Alice won a school award for achievement. She’d managed to produce a piece of work that was nothing out of the ordinary but, because of what she’d been through, they wanted to mark it. After that her best friend disappeared and when Jennie asked the girl’s mother why, she was told the girl was upset because she didn’t think Alice deserved the award as she was no longer sick. That knocked Alice sideways.
“People see you go through treatment and think it’s all over but they don’t see the constant tension that exists, knowing it could return at any time.”
To have Alice’s school friends turn away from her was awful and we compensated for it as best we could, but she needed company her own age and she found that at Tesco. Her voice wasn’t quite right. People could sense she’d been through something and were kind to her there. It also helped that Alice took her time with them. I tend to rush things because there’s so much to do but for her it was a matter of talking to people first and getting on with things after. There was a girl who worked alongside her in the bakery and they got on well together. Alice’s cousins helped too because when they came to stay, she could play with them.
“When you’re in hospital, weeks feel like months and even though it felt like hospitals were dominating our landscape, months could pass without treatment and sometimes even years.”
There were always the three-monthly check-ups to ground us and the tension leading up to Alice’s MRIs, but we would relax afterwards and enjoy life again. That’s when we really appreciated living near the sea.
“From age 16, Alice started to realise how serious her situation was and that’s when some fear crept in around MRIs.”
She’d been cancer-free for so long that when we learned it had come back at the end of 2018, we were floored. We sold our house and bought a smaller one in town, where we live now, and it was whilst Alice was having another operation I received a phone call to say the contracts had been exchanged. As soon as Alice came out of hospital, we moved in. Again, she had radiotherapy, which was a further surprise because we thought you could only have it once in your life, but in fact she had it three times, the last two being more targeted.
“The problem with Alice’s tumour is that it was wrapped around her brain stem.”
We thought we were back on track with it but it returned almost immediately in 2020. Things got more serious then, and the world had changed as well because of the pandemic. All our social lives went to zero but it was twice as hard for Alice. When her tumour came back a third time in three years we thought it might be the end, but there was another operation and radiotherapy, for which we were very grateful. Sadly, because of COVID-19, she had to be on her own and we weren’t able to check on her the way we had previously, which resulted in her going a week without a drug she needed. She ended up fainting and it could have been life-threatening, which upset Alice deeply, and us.
“When her tumour came back in 2022, we were told they’d thrown everything at it.”
We thought they’d given up but they said, because it was growing into her spinal cord, they couldn’t get to it without paralysing her or taking away all of her control of bodily functions. Alice didn’t want that and neither did we. It was a shock because she’d been through six operations and always bounced back but we understood. There was a period when she got upset and was angry but it was short-lived; we were amazed by how well she handled it.
“The way we dealt with things once hospital was over was by treating it as something in the past and focusing on building a life together.”
It was a good life and we miss her very much. I remember being around parents of a girl who had broken her leg and were feeling very sorry for themselves one time after we found out Alice’s cancer had returned. We decided then that we didn’t want to be those complaining people. Self-pity doesn’t help either. We didn’t want people’s sympathy, we wanted a normal life and by doing so and being present, we were able to be with Alice throughout her journey. You have to live within the limitations of what you can cope with and make that the norm.
“We made the decision early on not to give into fear.”
It’s so easy to feel sorry for yourself and we could have landed in a great big pit of doom and let the worry take over but fear doesn’t need a cause and quickly screws you up. Walking away from fear really helped us. Through Alice’s time in hospital we saw other children who were much worse off than her and it made us feel lucky. Other people never understood it when we said how lucky and fortunate we were.
I’m aware a large part of Alice’s life wasn’t as good as it could have been. If it wasn’t for her brain tumour, if we can think of such a thing, Alice would have certainly been more popular and academic. Jennie and I both read to her and Alice had a great love of books. She would have gone to university and started her own family by now, so we feel that loss too and it’s hard, but we have a lot of great memories from an enjoyable life.
When Alice died on 12 July 2022, aged 24, she’d had an amazingly social and happy couple of days with friends. I think Jennie and I were in denial thinking that something might happen to make Alice’s tumour go away. We thought that not disturbing it would mean it would fizzle out on its own, and we believed we had months or weeks left with her, not days.
“I’d read about what it was like to die from a brain tumour because you imagine all sorts of unpleasant things, but it wasn’t anything like that.”
When the time came, it all happened very quickly. I got a call when I was shopping in Tesco saying that Alice was having trouble breathing and I immediately returned home to find that she was OK. The local nurses who came in to care for Alice during her last couple of weeks were amazing people. They’d obviously seen it all before and were really efficient. Alice’s laboured breathing soon returned but she wasn’t at all scared. By then she’d lost her voice and had been growing progressively weaker, making it harder to hear her, but she said ‘thank you, thank you’. Alice died quietly in her sleep the next morning.
My hope, because Alice’s tumour is one of the rarer ones, is that if we can tackle her type, we can find cures for them all, and that’s a good enough reason for me to help. I don’t want people to still be going through what we did in 20 years’ time. We’ve got to keep trying. We’ve all got to try our best.
“As she neared the end, Alice said she didn’t want to be forgotten.”
This would be impossible because she was so special and full of life, but I’ve created a website to ensure that never happens. It contains information about her, videos she features in and photos of her and her work. Alice loved arts and crafts and I’ve created folders for her photography, needle felting, cross stitch and drawing. There is still a lot to add but to find out more about her, please visit www.alice-johnson.uk.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure