Neve

I suppose it makes sense to introduce ourselves, before I jump in. I am lots of things but here, I am mostly Neve’s mum. Neve died, aged 10, from a brain tumour. She was diagnosed at age 7 and her illness and then death changed her life and our lives, in profound and still unknown ways. I want to tell you her story and our story.

Neve is the 3rd child, out of 4 sisters. I don’t plan to tell you much about her sisters or her dad, because their stories are not mine to share. Suffice to say, Neve was very loved and whilst our family was unique in the way that families are, we were also not especially different to many other families out there.

Before cancer, I was a Lactation Consultant (IBCLC) and the Operations Lead for a small local charity. I had also been doing voluntary breastfeeding support for a decade before this. I felt very comfortable in the perinatal world.

Neve was diagnosed with an aggressive brain tumour in July 2020, after about 6 months of increasing mental health concerns and about a month of physical symptoms. She had emergency neurosurgery, then 6 weeks of radiotherapy, alongside chemotherapy. She had just transitioned to monthly chemotherapy, for the following year, when we discovered that the treatment had not worked and her cancer was progressing. At this point, 4 months after diagnosis, we understood that there was no longer any hope of a cure. She was given a prognosis of 1-12 months, but ended up living for nearly 30 months.

It isn’t easy to summarise the 2.5 years that followed. We often felt like Neve was writing her own medical textbook, leaving us all in a world of uncertainty. She regularly deteriorated, to the point where we thought she would die and then she would rally, often very dramatically. Neve endured a huge range of symptoms, from complex seizures, severe pain, nausea, emotional sorrow and distress, to name a few.

Throughout all of this, Neve had phenomenal support, from a range of services. Things weren’t perfect but Neve and our family were held by so many incredible people and agencies. If there was a postcode lottery, on the whole, we had won it. Neve had exceptional palliative care, we were never in any doubt about this. We were brilliantly supported by family, friends and our local community.

Despite all of this, Neve suffered a lot. Her final years were traumatic for her and for us, as we witnessed her suffering. In true Neve style, at the end of April 2023, she died relatively suddenly and unexpectedly. I am confident that she herself wasn’t suffering at the very end, even though it was shocking and traumatic for us.

As Neve took her final breath, I told her that I would tell the world about her. She has already touched so many lives and created so many connections. She was a complex and complicated little girl, who brought love and joy and curiosity to so many people. In the words of somebody within social care, “Neve was a legend.” My hope is that the ripples of her short life will be felt far and wide. I have so often mapped my experience of Neve dying on to my known Perinatal Map and this has brought me clarity and calm. In time, I will share these thoughts here.

I hope, through sharing her story and mine, that we can open conversations about illness, caring, dying, death and grief. I want to write to create connections and start discussions. I want people to realise that they are not as alone as they might feel. I hope Neve can be my companion in this, as I share her with the world. I will share more in time about my artwork but for now, I am learning to paint Neve. It is my way of connecting with her, as I paint her, in her bedroom, which will forever be known as Neve’s room.