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Charity registration number: 1204815 


Palliative care and children are words that no parent wants to associate, but sadly for us, and many other families in the UK, this is our story.


I remember the meeting room. Myself, my husband James, two palliative care nurses, a palliative care doctor, Raffy’s consultant and a nurse minuting the meet, sat in the corner of the room, heavy with sadness after caring for Raffy for two years. All eyes on us, James and I as we sat, feeling so very small and helpless as parents. All of a sudden, the term symptom management had been replaced with palliative care and as MRI findings were discussed and phrases like ‘not compatible with life’ were said aloud. Real words, real words happening to our family, real words talking about the bravest, most wonderful little human being, our son, our Raffy. At no point had the gravity of the situation ever been a factor. We had always been told that Raffy would recover his T cells in time and that his immune reconstitution would rectify itself. We had been assured that HHV6 wasn’t something we should be too concerned about and that he was still 100% donor and in full remission. HHV6 was forever being played down. Now at this time, back in the room, two and a half years after transplant we had ran out of time and we had run out of options. That was it, our son was going to die.

I had always thought there would be a miracle, that if anybody could pull through it would be Raffy, the little boy who had beaten three types of leukaemia, pioneering MPAL treatment for children internationally and had managed to remain cancer free since getting into remission, pre transplant. Five sets of eyes, all in our direction, searching to confirm we had grasped the gravity of the situation. Yes, we had.


‘How long?’ I ask


‘a week, or a few long days’


The palliative care nurse explained what to expect over those coming days; less awake time, no interest in food or drink, loss of consciousness, reduction in wet nappies, reduction in bowel movements, breathing changes, changes to the colour of his skin, some sounds that may sound distressing, but are in fact, due the nature of the process, just noisy.


‘You mean a death rattle?’




‘What will he look like?’


‘He might go white around his lips, he might appear greyer, or mottled’.


‘I don’t want him to be scared’.


‘He won’t be, that’s our job, to make sure he has what he needs’.

This was happening, this conversation was real, but it felt surreal or like we were watching it happen to someone on the TV. I knew that our little boy was lying in the other room, in his final moments on this Earth and that the time we had left with him was limited and we would have to say a final goodbye; that was something unfathomable to me. We were told that members of the team would be visiting each day to assess Raffy and that they were working alongside his care team to deliver optimum end of life care.

The next 6 weeks and 4 days were indescribable, but ill try to articulate the best I can. Raffy didn’t die after a few long days, he hung on for another 46 days; he was so strong. Following the palliative meeting, Raffy did show signs of unexpected improvement, he drank water from a sponge, reverted back to his first ever food; pear puree, said his final word, ‘mumma’, had active physio sessions where he tried out a new chair to support his new condition and got fitted with a special boot to help his dystonia. We really thought, for a moment, that we were going to get to keep him, but have to adjust to a different way of life supporting Raffy. Sadly, these improvements were fleeting. Raffy’s decline was apparent, albeit slow.


‘It is happening, just slowly.’


We watched him for 46 days deteriorate, have seizures, become less and less able, we watched his eyes turn in differing directions, not be able to support his own head, to be totally bed bound and reliant on 4 hourly bed movement to discourage sores, to slowly watch his daily monitoring, medicines, tests and blood products decrease and end of life drugs for seizures, anxiety and pain increase. 

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 29th 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.


As per our Charitable Purpose, we see the benefits of alternative treatments and therapies for children in palliative care. We hope to initiate relationships with institutions and establishments that host these children and supply supportive sensory equipment where required. We are passionate about comforting children during end-of-life care, as well as their families.

If you are a charity that works with children in palliative care or part of a trust that does not have the provisions for such treatments and supportive care and are based in the UK, please send us an email to the address below to get in touch with us, we may be able to help.