Oliver’s story: “He was loving, thoughtful and truly hilarious”

After a diagnosis of an aggressive brain tumour, Oliver lived for just over a year.

This is his story – told by his mum Clare…

Oliver became unwell in the Autumn of 2022: “Oliver suddenly became very tired and would vomit. He had a massive seizure and after treating him for various conditions, a diagnosis of a high grade glioma finally came on 1 December 2022. It was truly shocking. We clung onto hope that he could be cured, but we knew it was going to be an uphill battle.”

Oliver had radiotherapy and chemotherapy, and a successful surgery to remove the main tumour: “Everything was positive for a while and we believed we had taken a big step forward.”

But a few short weeks later, the tumour had grown back with a vengeance. Oliver’s family were told that there were no other available treatments. He was put on a palliative journey from September 2023. The family were referred to Francis House Children’s Hospice in Manchester: “I was very resistant to get involved with a hospice, it was like we were giving up, I think that’s a pretty common thought with parents. But I wish I hadn’t been, because we gained so, so much.”

A critical part of the family’s end of life wishes was for Oliver to remain at home for as long as possible before being moved to his grandparents’ house. “Their house held lots of very special memories, had all the space we needed to welcome family and friends and Oliver could look out over the fields and hills and see the sun rise and set. But our amazing nurse was struggling to piece together a care package to ensure he could end his life at home. I honestly thought that when your child is dying, you would have 24/7 care at home. But it turns out, that just isn’t the case. Most of the time it was done by myself and my family, and a patchwork of nursing care from various providers. We never knew if we would be able to staff the next week of care. It was all down to the compassion of some lovely nurses.”

Clare made herself heard to get access to the care she felt that Oliver needed: “Honestly I made a nuisance of myself. I had a friend who had a good job at our local NHS Trust, so I called her to try and get things moving. It was the goodwill of nurses who wanted to help in spite of, you know, barriers. But whatever stress and struggle they went through to deliver that plan, I didn’t see it. It was not visible to us. In the end, we had the best experience possible, given the circumstances. It was everything we could have hoped for.”

In mid November 2023, Oliver deteriorated rapidly: “I bought the book, Follow The Child, I must have bought 15 copies for friends and family. I believe every parent of a seriously ill child should read it. I felt more informed and better prepared after reading it.”

“Some dementia started to creep in towards the end of the year, and there was a massive seizure in there too.”

Clare was directed to Together for Short Lives’ resources:

Oliver was completely wheelchair bound at this point and his family and nurses were managing all of his personal care from bed.

The family took a final holiday to Anglesey for the weekend to celebrate an early Christmas: “We knew he wouldn’t make it to the end of December, so we wanted to have the memory. When we got home I called our Macmillan nurse and told her that the decline was so rapid, she came and installed a morphine driver. We knew time would be very short with him.”

Just over two weeks before Oliver died, he was moved to his grandparents house: “It was where we wanted him to die, surrounded by the love of his family, green fields, the sound of nature and just peace.”

Oliver was now completely uncommunicative. He was conscious, he had lost his ability to speak, but was able to squeeze hands.

Friends and family would take it in shifts to stay awake with him overnight: “By now, he had to be constantly watched, so they would work in three hour shifts. I slept next to him on a mattress, but I couldn’t be awake 24 hours a day. Without my loved ones, I think we would have had to go to the hospice or hospital.”

Oliver died on 2 December 2023 at 9.15am on a Saturday morning.

“Oliver died peacefully and without pain. It was a good experience if you can describe it as that. I am very aware of how this time can unravel for families. So we count ourselves lucky.”

The family are “still feeling their way through their grief journey.” Oliver’s twin brother George has been supported by their local hospice and his group of friends that he shared with his brother.

After Oliver died, Clare received a Butterfly Fund grant from Together for Short Lives.