Olivia’s story

Karen shares: “Olivia was diagnosed with NF1 when she was young. At the time, it wasn’t something I had heard of. It affected her in some ways, like she was hypermobile, she wasn’t very strong in her muscles, and fine motor skills didn’t develop well like putting jigsaws together, tying shoelaces and using a knife and fork. Although it presented some challenges, everything was manageable.”

Olivia added: “I was not too affected growing up. Nf1 is part of me and who I am.”

When Olivia was 13, she had an MRI scan which found a few tumours growing. From that Olivia had several MRI scans to monitor what was happening and then multiple surgeries to remove multiple neurofibromas.

Karen said: “A lot of Olivia’s tumours  grew internally and in June 2022, when Olivia was 21, she had about five tumours removed. There was a tumour that she found only days before her surgery that suddenly appeared and was very fast growing, tender and hard. It was removed in the surgery but then we got the confirmation in September that it was the first of 7 Malignant Peripheral Nerve Sheath Tumours – an aggressive type of soft tissue sarcoma (MPNST).

Olivia said: “It is really important that people know about the impact of NF1 and the risk of malignancy. As it is very rare I didn’t think it would happen to me, and I would like other young people to know it can happen. If there are any changes to their lumps, please get advice straight away from a doctor.

“I found a lump that I had never seen before, it suddenly appeared and it was tender to touch. I knew I needed to get it checked out.”

Karen said: “I got a call to tell me the news. I was in a meeting at work, Olivia was with me as she also worked at pre-school at that time. It was the surgeon who had removed the tumour who called and told me unfortunately the histology testing confirmed it was a malignant tumour.

“Everything happened very quickly and Olivia had her first surgery within a few weeks. With everything we had been through with Olivia’s health, she had always managed to get through everything and had shown such resilience. In a way, this next surgery just felt like another operation because we were so routined with them. We were used to Olivia being unwell as a result of surgery but then being well again after her recovery. I think the seriousness of this situation probably didn’t have the impact on me that it would have done if it was something new and my daughter had not gone through what she had.”

Between June 2022 and February 2025, Olivia had a total of 6 MPNST’s which were all removed surgically, she also had Proton Beam Radiotherapy twice, totalling 63 rounds. This was all carried out in Manchester, far away from home. However, sadly in 2025, the family received devastating news.

“In April 2025, we saw a swelling in Olivia’s tummy and we went to the GP who confirmed there was a mass. The hospital in Manchester ran some more tests and at that point we were hopeful surgery would be planned. Within a week or so, Olivia became violently sick and very fatigued at home and she was admitted to the hospital in Manchester. She had a scan and a few days after being admitted we found out this tumour was inoperable. It had grown incredibly quickly and aggressively and the positioning meant it couldn’t be removed. Radiotherapy was not an option because of the previous treatments she’d had, it just would have been too destructive for that area in her body.

“Olivia’s diagnosis wasn’t very positive and without treatment she was given only weeks to live. With the palliative chemotherapy they said it would give her time to make memories. Olivia was told that a year was optimistic.”

“We are living in a new normal now. It’s very emotional, it’s very hard for me to watch one of the most beautiful souls on this earth be cruelly ripped apart by this disease. It is absolute torture to watch her suffer and see the effects the chemotherapy has had on her and to try to explain it all to people. Olivia has had nine cycles of chemotherapy over the last year. The harshness and toxicity of what she has gone through is heartbreaking. She’s had hair loss and extreme weight loss, so she doesn’t look like herself anymore. She has had a chemo induced seizure which was very frightening. She is very weak and fatigued. The sickness is just incredible; she has mechanical vomiting which hinders her ability to eat as she is just sick when trying to eat. This hinders our ability to go to tearooms which Olivia loves to do.

“She has been stripped of everything really, and as a family, watching her go through this it is just the most heart-breaking thing in the world. Olivia has lost her independence, what independence she did have. We’ve had a stairlift fitted, and I help her in the bathroom and to get dressed.”

Young Lives vs Cancer social worker support

Karen said: “Our Young Lives vs Cancer social worker Kelly has been such a support, not only when times are hard, but when they’ve been good as well. When we’ve been scared to be excited about something, she’s always offering kind and caring words, and she has become what we like to think of as a really good friend.

“She’s shared tears at times and has always been there with a cuddle and just that listening ear. A year ago, I had some very hard conversations, and I could open up to Kelly about those and how to deal with the information I was hearing. I don’t know how I would have got through it all without Kelly. She’s also become such a strong support for Olivia. A little bit like me, there have been times when Olivia has had difficult things that she wanted to talk about, and she’s been able to open up to Kelly about them and then felt strong enough to talk to me about it.

“They will sit and talk about Taylor Swift, music, books or what Olivia is watching on TV – and if that leads to a deeper conversation then it does, and if it doesn’t, that’s fine too. Kelly knows how and where to take things and has this real intuition for what is too much, or what is OK.

“Kelly was the one that had the time for us and always made that time – and I think without her, sometimes I would have found it quite a lonely place to be in and would have worried that I was putting on other people who didn’t always have the time to listen to me.”

Olivia said: “Seeing a familiar face in the hospital and at appointments has been wonderful and comforting. The tips and advice Kelly has given me have worked and have supported my emotional wellbeing.

“I remember that Kelly did me a heath passport when I was an in-patient in the hospital. I was struggling with things that were happening and she helped to get my thoughts across to the medical staff – she listened to my worries and then passed these onto the medical team.

“If I did not have Kelly’s support, I would have struggled a lot more. I do feel happier and relieved when she is around in the hospital. At times I would have felt alone, Kelly allowed me to talk about my worries and also talk about the positives and achievements. She also put me in touch with other people when I needed them like the complimentary therapist.

“I don’t live near the hospital, but Kelly has always found the time to ring me to check how I am doing and offer support if I have needed it. She has even visited me at home.

“Kelly has always been so eager to hear my happy moments but also offered me time and space to talk about my worries and fears. Sometimes, as a young person going through a cancer diagnosis, there are discussions which are hard to have with family, and she has offered the space for me to share these.”

How a Home from Home helped

The family were also supported by Jack’s House, Young Lives vs Cancer’s Home from Home in Manchester.

Karen said: “We’ve stayed at Jack’s House on and off over the last 2½ years. They’ve always been so flexible with us. I remember Olivia having a biopsy appointment and we needed to be at the hospital for half 7 in the morning. Jack’s House gave us a room the night before which meant we could stay close to the hospital so that we wouldn’t have to face a two-hour drive early in the morning and have that stress. The Home made it a much more relaxed process and much easier to cope with. Obviously financially the Home helped too as we weren’t having to pay for a hotel nearby. I could take my own food aswell and I would batch homecooked food and take it with us.

“This last year we’ve spent more time at Jack’s House during Olivia’s chemotherapy. It also supported our family by letting Lee, Olivia’s Dad and her siblings Damien and Becki stay there. It was so important to have our family nearby for a period of time rather than just driving and visiting and leaving again. That was what Olivia and I needed.”

Olivia said: “It was nice to be able to have my family nearby me when I was in hospital and needed them close to me. It is a very comfortable home from home. All the staff there are so friendly and kind and they made us feel comfortable and welcomed.

“I do not live near to the hospital; I could stay at Jack’s the night before appointments which reduced worries for getting to my appointments on time. It saved my family accommodation costs and made things more manageable – we weren’t stuck in hotel rooms with no facilities. Seeing the staff each time is like seeing old friends. I have received gifts and been referred for treats by my Social Worker, Kelly and Jack’s House. These have made me feel loved and cared for. The gifts and the experiences have helped me smile and feel happy during some very difficult times.”

Karen added: “It really helped Olivia because she needed that little bit of normality by having people around her that she knew and loved and wanted to be with. Having immediate family being nearby made a huge difference to Olivia emotionally. With Lee working and trying to still make sure we have an income coming in it made it nice that he could come and stay for a weekend and not just a few hours. It just gave her the comfort of her family nearby.

“The staff are so wonderful too at Jack’s House. We’ve been on this really horrendous journey, yet without it we wouldn’t have met some of the most beautiful people that we have ever met. I’m very grateful in a lot of respects that we’ve had the opportunity to get to know these people and that they’ve been part of our lives and have shared the journey with us and that they care for Olivia like they do.”

Cancer costs and support

Karen said: “Travel to and from the hospital was the way we were most financially affected.  It’s about 60 miles to the hospital in Manchester and it could take us anything from 1½ to 3 hours to get to it or get home from it. That is part of the reason why having Jack’s House there helped so much.

“I had to take time off work during Olivia’s surgeries and recoveries, and used holiday pay or was unpaid, although my work did try to support me financially when possible. When everything happened last year I finished work because I had to, Olivia had to be my focus. Even though she was 24, she was a young adult in desperate need of having her mum with her throughout every step of the way.

“Kelly had pointed me in the direction of financial advice through Young Lives vs Cancer. We applied for the PIP when Olivia was first diagnosed through Kelly’s advice and Kelly helped us with the forms. The forms are horrendous and very long winded to complete! When Olivia started on palliative treatment, Kelly then helped us when we needed to amend the PIP and Olivia received a higher rate as a result. Under Kelly’s guidance Olivia also applied for universal credit, and that took some stress off of us. Kelly also advised me to look into Carers Allowance and I was able to claim it. With that financial help coming in and us still having our mortgage and bills, it still allows us to maintain our family home, and also for Olivia to have her own independence to buy what she wants when she needs or wants something.”

“She’s got the biggest smile and a heart of gold.”

Karen said: “I try to live life on a positive, I celebrate the tiny baby steps forward that we make. It’s the simple things in life that matter the most, they really do. Like yesterday, we stood and baked dog biscuits together and it was just beautiful. To have Olivia perch on the breakfast bar stool in the kitchen and help make them with me was really lovely. We also like to go for walks with our dog when we can.

“Kelly referred Olivia to The Willow Foundation for a special wish, and we went to London and Olivia met her two favourite YouTubers who she has followed for more than 10 years and the Foundation arranged for us to see Wicked too. That was absolutely beautiful and luckily for that week Olivia was well and found the strength for it. It’s the small things that are really important at the moment.

“Olivia has met a lot of friends on the internet through the YouTubers she follows. They live in the UK and all over the world and she speaks to them a lot. They have been a great support. This is where the internet has done a lot of good that we don’t always hear about. Having this group of friends to chat to and receive messages from has been so important to Olivia. They have sent her messages and gifts, from as far away as America and she has even had friends visit at home. Friends are important to Olivia and she has really needed them.

“Olivia is probably one of the kindest, nicest, fairest person you could ever meet. She’s loves animals, music and reading and especially loves musical theatre – Six, Hamilton and Wicked being her favourites. She leaves an imprint on everybody that she meets. Everybody loves Olivia – it’s like she has this superpower to make people smile. She’s always smiling, no matter what is thrown at her although at times it is difficult to smile. She’s a person who makes a difference in our world, she is polite and respectful and it’s very cruel that this is happening to somebody who is just so good. I’m so proud that she is my daughter. I am blessed. There is a song in the Wicked musical towards the end, called For Good and when we sat listening to that last week, it just made me think that I am a better person for having Olivia in my life. She’s taught me a lot. She’s got the biggest smile and a heart of gold.”