We started caring for Neve and her family, from Oxford, in October 2020 after she was diagnosed with an incurable brain tumour. Neve was diagnosed in July 2020 and started her treatment straight away – with surgery, then radiotherapy and chemotherapy. She was referred to Helen House for palliative care to help with some of her symptoms, and then for more support once it was apparent that her treatment was not working. Neve continued to come for day visits and longer supportive stays until her death, at home, in April 2023.
Neve’s mum, Emily said, ‘From her first visit she really liked it. The hospice is a child’s dream come true, with all the toys and one-to-one care.’
Neve was seven years old when she first became unwell. She was a strong-willed child, full of opinions and loved making people laugh, as well as being curious and determined. She was one of four sisters and had been very healthy during her life. During the lockdown of 2020, she gradually became unwell. Firstly, with mental health symptoms which developed into cognitive, then eventually, she started displaying physical symptoms. In July 2020 she was diagnosed with a large aggressive brain tumour.
Neve had emergency neurosurgery but, despite radiotherapy and chemotherapy, her symptoms returned within a few months of diagnosis. Her family were told that her cancer was continuing to grow and that she likely had between one and twelve months to live. Without any hope of a cure and after seeing all the medical trauma she had gone through; her family and medical team decided to stop cancer treatment and focus on her quality of life. This was when Neve started coming to Helen & Douglas House for palliative care.
Coming to Helen & Douglas House
Neve was first referred to Helen & Douglas House in October 2020 whilst she was still undergoing her treatment. Initially, her visits weren’t for medical reasons, but for support and to get to know the hospice in case she needed clinical support later on.
‘She came for a day visit at first, and she had another visit booked already for the week after. Then we had the news from the oncologist and realised that we were going to need Helen & Douglas House much faster than we thought.’ Neve’s mum, Emily.
Following the news that her tumour was growing; Neve came for another visit. She was having a great time, but then suddenly had her first major seizure. At this point, despite medical care from our doctors and nurses, Neve ended up on a ventilator in intensive care. Her mum Emily told us how reassuring it was to know that Neve had been cared for by one of our doctors from the moment her seizure started, as it would have been very different if she had been at home on her own with her.
‘During Neve’s stay in Intensive Care, a Helen & Douglas House doctor came to see us and promised that “they would scoop us up now.” This was so reassuring at what was a very scary and overwhelming time for us all.’
Neve’s regular visits
Neve continued to visit the hospice for day visits and for longer supportive stays, most of which were last minute to help ease her symptoms. As her condition deteriorated, it was reassuring for her family to know that she had formed a close relationship with the care team and that her visits gave her comfort as she felt like it was a second home. Her mum said, ‘she knew that they were her people and that they were there for her whenever she needed them’.
‘Something about being in the building, with the care team, seems to magically ease her symptoms. I don’t say this lightly, as a firm believer in evidence based medicine. However, it happens too often to be a coincidence. I know there is a real fear that accessing palliative care will shorten a child’s life, but we have found the opposite.’
Over the past few years, the doctors and care team worked with Neve and her family, initially developing a palliative care plan for her pain and symptom management and then adjusting this as time went on. As well as this, we provided support for her family, including her three siblings. Neve’s sisters have received 1:1 support and they also joined the sibling support groups – doing a range of fun activities initially virtually, but more recently in person including bowling, laser tag and more. They were joined by other siblings whose brother or sister were also being cared for by the hospice.
‘Throughout the end of Neve’s life, I would speak to Helen & Douglas House care team nearly every day. All I have to do is call and say “it’s Emily, Neve’s mum” and then they’ll know me, whoever I speak to. I don’t know how they communicate between each other, but it’s pretty impressive.’ Emily, Neve’s mum.
One to one care
Whenever Neve would visit the hospice she would get one to one care and the chance to relax and make memories with the care team, like doing arts and crafts and playing on the interactive magic carpet. She even got to meet some visiting penguins one summer and sheep the next! Even when she wasn’t at the hospice, the team enabled her family to ‘seize the moment’ and helped them visit the seaside by arranging for a local hospital to care for Neve if she had a seizure. We even helped set up a toy store ‘trolley dash’ as one of her wishes.
A unique approach to care
In November 2020, Neve was given between one to twelve months to live. She went on to live for another two and a half years. During that time Neve suffered a lot with pain. Her medical situation was incredibly complex, in terms of her medication, unpredictability, pain and seizures. She suffered a great deal and also struggled emotionally. During the end of her life, both her family and our care team did everything they could to ease Neve’s suffering and to cram in joy and living whilst they could.
‘Helen House really have scooped us up and held us, in so many tangible and intangible ways. A friend likened HH support to gravity – it grounds us while we navigate this huge trauma. The team helps us find a foothold, to continue being a family and to care for Neve. They provide a foundation on which we can be both her carers and parents.’
In April 2023, Neve died peacefully at home, surrounded by her family.
Some of the special moments we helped create
Neve’s mum shared some of these special stories from the hospice, which she calls ‘small and large kindnesses‘. Many of them aren’t something you’d expect in a normal clinical setting, but demonstrate how unique and special our approach to every child’s care is. We couldn’t include them all, but here are some of our favourite ones:
- Neve became the first child to have Freddos (chocolate frogs) added to her drug chart, prescribed alongside emergency seizure medication.
- At the start of her time there, Neve’s appetite was low, due to chemotherapy. Mostly she ate omelettes, prepared in a very specific way. Each member of the care team who looked after her learnt how to make Neve’s omelette, exactly the way she liked it.
- Bath time at Helen & Douglas House for Neve is rarely a calm affair. Neve would convince the care team to fill the bath to the very top and to make it nice and hot. Then she would use syringes to spray water at the nurses and carers, turning it into riots of fun, full of laughter and giggles. Nobody was safe from a soaking, not even the consultant who occasionally stayed to help with bath time!
- I will never forget the time I received a phone call from the care team, asking whether it would be OK if they painted Neve’s nails. This felt like such a small thing, given everything else she was going through, but it highlighted how much they wanted to ensure that they were looking after Neve in the way we would want them to. They were always very clear that we were the experts in Neve and that they were there to learn from us, in how best to care for her and communicate with her.
- On Boxing day, Neve woke up with a severe headache and vomiting. It wasn’t long before the Helen & Douglas House on-call doctor rang me back to figure out how to help Neve. She quickly concluded that Neve needed steroids and I wondered how this would work, on a holiday? However, by the end of the day, Neve had started on the first dose, prescribed, and sourced from a local pharmacy, on a bank holiday.
- The care extends beyond Neve herself. One day, I was on the phone to a Helen & Douglas House doctor and nurse and it was clear to them that I was having a hard time. They immediately suggested that I bring in Neve for a day visit that weekend and that they would make up a flat for me to spend the day in, to have some space for myself and to rest and even to sleep. It was a day of respite, to have quiet time alone, to be fed and to know that Neve was happy and safe in the hands of the Helen & Douglas House care team.
- Their pain relief is not always of the pharmaceutical variety. One day, when Neve had been in a lot of pain, she had asked for a squishy, laughing banana, with a face. She said this would make the pain go away. We scoured the internet in vain. I mentioned all of this in passing to a Helen & Douglas House doctor and thought nothing more of it. A few weeks later, Neve received a parcel in the post. Inside, was a squishy, laughing banana with a face, handcrafted by the doctor and her surgeon husband. Neve was overjoyed! This has turned into a collection of squishy, laughing fruit and vegetables, which make Neve smile when things are tough. Often, this is the best pain relief! And…You can watch a video of the banana below – warning the laugh is very scary!!!
As a charity, Helen & Douglas House need your kind donations to continue to care for children like Neve and to support her family.
Neve’s mum fundraised for us, in gratitude for the support Neve and her family received. She ran Oxford Half in 2021 with a team of friends and together raised over £18,000.
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