"So I'm going to die?"
My son David, or DD as he was known, was asking me calmly in a small hospital room in the presence of his cancer doctor (consultant paediatric oncologist), his brain surgeon (consultant neurosurgeon), a specialist nurse and his father. "Yes," I replied.
This was DD's response to hearing: "I'm afraid that David's scan results were not what we wanted to see." Then it's a memory blur until, "we can all agree that there is now no chance of his cancer being cured".
It had been the longest haul. "Arduous", as our exquisitely dry surgeon put it. Five years in total, taking in 11 brain operations, two solid years of chemotherapy, the maximum allowed full brain and spinal radiotherapy, and a stem cell rescue. Our initial 75% chance of eventual cure had vanished, but everything had been done by everyone. I knew exactly what to do next and therefore led: "We're going home."
Everyone looked at me. Our cancer doctor looked puzzled. Usually conversations were directed to, and then by, our son who was by now 16 years old. DD was incredibly bright and interested in science, with dual ambitions to go to university to read something to do with the environment and to acquire a girlfriend. My husband and I only joined in if DD looked to us for direction or if he'd missed out something clinically important.
But I knew something they did not - not even my husband, the signs were so subtle: DD had the beginnings of dementia. He'd had a minute memory lapse, and then said something odd about a mundane car journey about a month or so before. These incidents were totally out of character and until I saw that scan, I had tried everything to explain them away. Other symptoms had driven us back to hospital. So I knew that to have expected DD to have made the most difficult decision of anyone's life would have been unfair, unnecessarily stressful and cruel.
Given that DD's type of brain cancer was very aggressive I knew we only had weeks rather than months, so time was precious. Essentially we had to weigh up whether any treatments offered now would be worth it - whether the quantity of life possibly gained was worth it given the impact of side effects on the quality of his life. The scan showed multiple spinal and brain tumours and the longer we tried to keep him alive, the greater the risk that we would not be able to control inevitably escalating pain - not that I said this out loud to my son.
We were choosing maximum quality of life for our son, which potentially meant a shorter one. We were going home for full, active palliative care to take away all the symptoms of his ghastly disease in order to do the things he loved with the people and animals he loved. This is the essence of this meeting, of the transfer from curative to palliative treatment - changing your hope from one of cure, to something else you want to achieve. You are not giving up. My husband of 29 years looked at me and we knew we were right. He nodded, in tears.
DD was in shock. He did not ask any questions until we got home that night and I was hauling myself into bed. "Why can't I just take a pill now if I'm going to die anyway in a few months? Why do I have to wait?"
He had started following Buddhist teachings in the midst of his treatment - life is suffering and so on - the idea of death, therefore, didn't frighten him but I suddenly understood that the process did. I decided not to explain "because it's still illegal" but rather to allay his fear of the unknown: "Do you remember the other three times you've nearly been dead?" He shook his head. "Right", I continued, "it'll be the same, you won't know. We'll have all the medicines to make sure you can't feel anything, so until then we can just enjoy ourselves and party." That satisfied him; he did not ask any questions about death after that.
Three years on from DD's death, the decision to go home was the best I've ever made alongside marrying my husband and our deciding to have the children. DD's quality of life during what turned out to be exactly three months was fantastic. Even fading into a coma in the last few days, the last lucid thing he said was, "I love it here". The cat was on his bed asleep; his little sister was on a play-date but due back any second; his brother had a friend round; my Mum and sister had popped over to give me a hand as I was, inevitably, exhausted. All was as it should be.
This death was a huge event, like a birth, but one within the framework of a normal family life. A mum whose six-year-old had died at home of the same brain cancer with the young siblings all present - we had become friends through our sons' illness - had given me the confidence that I could do it too. "The death was okay", she said. She was right. It's the loss that is not.
Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and those who care for them - for more information, visit their website.