We had two amazing palliative consultants who talked of ‘parallel planning’, for scenarios, but sadly the same outcome. We watched Raffy’s seizure activity increase and witnessed the beginning of large gastro bleeds. Three weeks into palliative care, Raffy had two large consecutive bleeds whilst seizing and that day, the crash team were called on three separate occasions. The DNR was signed. The severe leukoencephalopathy that had been noted on his MRI and the damage to the white matter in his brain was not going to improve. The areas effected controlled basic bodily functions. We were told by the CPS to expect him to pass within the next few hours. We watched his resp rate decrease to 4/minute. We sat, on a knife edge, watching him, taking him in, sniffing his head, holding his hand and trying to mentally note its soft texture, we cried and cried. We stroked his hair, kissed him and placed his ‘final’ outfit; colourful pjs, a brand new dressing gown, socks (so his feet were not cold) stickers to cover him in (as he was the bravest boy) and the braids of our hair we had cut for each of his hands to hold. We told him over and over again to wait for us. We told him how sorry we were that we couldn’t make him better.

Raffy recovered his resp rate during the night and it was now within normal range. His bed sheets were changed from white to black, this is done so the gastro bleeds are not as distressing to witness by the child and parents. We were grateful for the extra time, but we knew that Raffy was not going to improve. It was so full of conflicting emotions. During this time, we had daily visits from the hospital chaplain, Jim. We formed an attachment to him, it was something we would long for, as if the prayer was going to perform a miracle. It was at this point I asked if the hospital offered any alternative therapies, such as reiki or massage. This was something that I had thought of following over 100 static shocks from Raffy as he was deteriorating, I pondered the concept of the energy field breaking down as the body began to shut off. We were told that unfortunately, the hospital did not have a pot for this and that some did and they were trying to initiate it for the future. Over the next few hours, I had managed to engage with a reiki master, based in Mayfair. I told her the situation we were in and she insisted on coming to treat Raffy, so that’s what happened. She Ubered across London and came into our isolation room and treated him for an hour, all the while his regular nurse was administering his Midazolam. James and I sat and watched in silence. Unbelievably, after days of being motionless, Raffy’s arm lifted up, his foot moved and his toes wiggled individually. I filmed the whole episode. I am still, now, in disbelief when I watch it over. The treatment also allowed him to open his bowels, without a gastro bleed, which had been the first time for a few days.

Of course, this did not save Raffy, but it appeared to bring him comfort. It is safe to say that being a parent and watching the process of our own child die, you want to do anything to make sure it is as comfortable as possible. Pain free. Anxiety free. We struggled to find supportive pillows to aide Raffy’s comfort, so we made do with what we had available. We played healing sounds, Danny the physio continued to massage Raffy’s arms and legs, and nurse Laura and the team continued to turn Raffy frequently and helped bathe and dress him with such care and gentleness.

Weeks beforehand we had decided to pack all 6 months’ worth of Raffy’s belonging into a cage and arranged friends to collect and store for us. I came home to collect Raffy’s baby sister and returned as our family relocated to a bigger room, large enough to house the four of us. For a week we stayed together and then, in the early hours of 29^th March 2023, we woke to a nurse and doctor standing above Raffy. The nurse, Katie, told James that Raffy’s sats had dropped, with oxygen support to 48. Did we want him to go to PICU or did want we want to remove the oxygen mask?

‘Is it happening?’ I heard James say, our nurse slowly nodded whilst I saw tears appear in the eyes of our doctor. I got into bed alongside Raffy and told him,

‘Cuddle this way’ something he used to say to me. I spooned him, my head next to his. James sat beside him, holding his hand, tight. We reassured him he was ok to go now, he could stop fighting because he must be so tired, he had fought so hard. We told him to remember the plan. We told him to wait for us because we would find him again. We told him we loved him. We cried as his breathing changed, strange sounds coming from his chest and throat and then his final breath.

He was gone.