Retrospective Torture

Looking back at treatment and care when you're not in the thick of a living nightmare, is a nightmare itself when it all comes into focus.

My love for dexter blinded me when his life came into question, he was so gravely ill and I was desperate for someone to help him, I was so willing to believe in the consultants, believe they knew what they were doing and within those first 14 days of him being admitted, Jack and I, signed up to frontline treatment, we questioned everything but because Dexter was shutting down before our very eyes we ultimately left into treatment as deer in headlights.

Forgive me if I'm repeating myself, It just this is what's on my mind this week, circling my brain like a merry go round I can't get off, torturing me for my naivety.

Now six months after his death, as reality seeps in and everyones lives go on as they already did, we are still reeling from the death of Dexter and the barbaric year of treatment and the 15 months of side effects we managed before it ultimately returned and drained him of life.

I try not to focus on his treatment or things I feel we can't change, I can't change what we or they did in the crucial moments but I would hope they have learnt enough to make sure they would try other things if another child like Dexter was admitted to Piam Brown. I'm pretty sure that wouldn't be the case, they would still go off the minimal tired statistics, the same drugs, the same treatments, with the same poor outcomes.

I'm not convinced there was anything that could have been done to save Dexter in the long run, but I think the fundamental lack of new treatments, thinking and damn sheer bravery from medics, stunted the possibilities and ultimately failed Dexter.

Worst of all, me his mother, I failed Dexter and I hold immense guilt over it now. I know Jack silently resents me for not pushing hard enough for micro surgery, my only weak, defence was that my thinking, heavy with distress and brain fog was not to my usual level of fight, recovering from a strong dose of illness, nine weeks of the worst, cough, cold and head, that I now know to be covid and being heavily pregnant had rendered me exhausted under the unbelievable events that were unfolding inside that hospital room. Jack had read about micro surgery, that it had been done on children but our consultant insisted that it couldn't be done, that he'd lose an eye they would go through the face, and clear margins couldn't be achieved, so even debulking the tumour was point blank refused. Jack would relentlessly push for it, obsessively talk about it, rightly so, but in the end I was exasperated with the knock backs, the walls of no and I said to him we had to be realistic, no one was going to remove that tumour and no one would.

Imagine my absolute horror, then in relapse, the surgeons that said micro surgery wasn't a thing in children, went in through his nose, cut into the back of his face and debulked the whole of the old tumour, only they couldn't do it round the new part that had grown round the arteries that led to his brain. I felt sick with rage, why the hell hadn't they done that in front like treatment, before the hard hitting chemotherapy and radiation, I had believed them when they said it wasn't possible and the effects would be too great on Dexter, but he woke and he was ok, and the pain was manageable. The only hard bit was on that ward, he cried at me and said he never wanted to be without me, I told him, I said ' aw, baby you don't need to worry yourself with thoughts like that, we just need to keep eating so we can beat bob the blob'. I was so stupid, I believed it when I said it, I had no idea that they weren't planning to treat to cure any longer. And the hardest thing is, Dexter knew what was going to happen before I did.

Now today I question the faceless panel of supposed experts that decided a root for Dexter, not even discussing every option with us. I question the consultants that manage us, making us believe that because we've been listened and spoken to our research and voices had an influence over his treatment and care, when ultimately it didn't. We were managed to do the only plans they had that don't work, with the treatments that don't work, and we had such faith we had no idea we locked into a machine that plays out, repeating the same treatment on our children and the treatments haven't evolved enough since the sixties and were meant to believe these are experts?

I had our consultant talk to doctors in America when Dexter relapsed, they allow our involvement then, when they know there's nothing else to be done, doing a dance to manipulate our broken hearts into believing we did all we can do.

The truth is, parents should have more control in frontline treatment, that is where parents should have a say.

Now, when it's too late, the doctors and surgeons are willing to meet us, appease broken parents in the aftermath. Im not surprised the NHS is sued so often, its the only way parents and patients are listened to and heard with seriousness, because it's attached to a price tag and the money matters to them.

Dexter's relapse was discovered after I had requested he have an op to open up his nose, the right hand side of his nose had collapsed as a result of the radiation and I had suggested he had the op to make his life more comfortable by having the nostril opened with stints. He agreed. I emailed our consultant to check she knew the surgery had happened, she said she hadn't read the emails and she cancelled it the night before. She wanted more scans.

In the January I had worried about him having small nose bleeds, why was it three months in-between scans, they had reassured me that his December scans looked good, but now in March because of the proposed surgery, new CT scans and MRI formations were added. I knew that day when the radiographer said, we have two more formations to do, and then he took a further 45 minutes that he'd seen something and he had, lurking further back the cancer had grown.

Our consultant told us, and she said ' we found it by mistake' I didn't know what that meant, I assumed maintain scans, scanned through all of dexter little face and head, but now I wonder if they didn't scan further back and they would have seen it at his December scan had the job been more thorough. Not that it would have changed anything and when I asked what that ' mistake' comment meant, I got a very formal email in return, not noting the wording ' mistake' was ever used.

Frontline was a well practiced play out for Southampton, confident in the methods and well versed in th treatment, despite its outcomes and successful rates, they are happy to do it because its all they have, the only options. But in relapse, the Southampton team fell apart like wet cake, our consultant went on holiday without handing over our case properly and the doctor who eventually spoke to us apologised for the face we hadn't realised our consultant was off, we get it, she has a life but just let us know who's our contact and make sure they know Dexters case.

They weren't clear and very thrown by him getting covid before his biopsy - I mean we all knew it was rhabdomyosarcoma, why they even bothered with these surgeries was laughable. They originally told us it was a second tumour, but it wasn't, it had grown out the side of the old one. They left Dexter waiting, delaying his treatment after he and the whole family contracted covid for a further ten days, the cancer slowly growing inside his face all because Southampton hospital's covid procedures, protecting their hospital and staff. Dexter was seven, he had an aggressive, fast growing cancer inside his little face, and they couldn't set up a special theatre and wear PPE because he had covid and the cancer was in the respiratory region, shocking. The truth is, once a child relapses, they know theirs only 8% chance of survival, in a non operable location, we were foolish to not realise, there was no saving Dexter, they knew all along from his March 4th 2022 scan he was going to die, and we were just too stupid to understand that.

We were angry and frustrated, why hadn't they rushed him in, put the port in, started chemo? They said in front line treatment they had held back 30% toxicity, they don't mention its not the same strength as frontline treatment and it has very little chance of curing them. They don't mention then that the cancer would have mutated and become stronger and that it will just give you some time. Well in Dexter's case, there was no time, the cancer grew straight through that VI treatment, they left off the T drug so they could put him on a trial, but then he wasn't eligible and to be honest, testing on my baby for the sake of others, the whole idea of it made me angry and I know that's selfish, but I wanted someone to save my baby, at that time, helping to collect data for them was of no consolation.

I put Jack off badgering on about surgery, it was me who couldn't take the endless rejection to the idea, the conversation going round and round, always with the same outcome. I regret it, I don't know who we could have found but what if there was a mavric doctor somewhere in this world that would have done it. Would it have made a difference, not trying means we'll never know? I was naive and faithful that the doctors were all working together , all finding a way, but then since, parents of a child with the same diagnosis as Dexter, they had their son's tumour debulked before frontline treatment and it makes you think, what if? But what if debulking it makes the cancer grow faster, it was everywhere after Dexter's was touched by that surgeon, but would that have always been the case? Either way, I didn't fight hard enough because I believed it wasn't a technology advanced enough on children and then they bloody did it, in relapse, its like a massive kick in the teeth. I let Dexter down and so did they for not even trying in front line.

When Dexter died, I felt I had no regrets. That we had done everything for him, but now six months down the line, looking at it from outside the desperate trauma and grappling understanding. I wonder why when Dexter was responding so well to maintenance chemo did they stop it, she told us some children are on it for as long as two years but after six months she'd weighed up the long term effects and decided it wasn't right to put him through that. However in front line she said, you can't beat this cancer without all three components, surgery, chemotherapy and radiation. So why was she ever letting us think his life would go on, she should have kept him on the maintenance drugs, because they were obviously holding it at bay when the damaged tumour was trying to rebuild.

Hind sight is a wonderful thing and I can't ask them to change what they did and I can only torture myself for not pushing more, for being more of a pain in their asses and not believing them with such conviction, but I want them to acknowledge the treatment isn't good enough, don't expect grieving parents to fund and research for change, how about proper funding is put into childhood cancers, 3% isn't enough. How about they stop leaning on a handful of statistics and start learning from our children that are dying, how about they actually involve parents, the parents who will be emotional and annoying for the medics but in the long run they are the ones living with the consequences of their faceless decisions. I want every surgeon on Dexters case, to see his face, see his love for his siblings, his friends and life. I want him to be more than a challenging case, he was a seven year old who loved living and deserved everything.

The chromatic bang brought colour to the world, and with colour brought a magical energy that could be used and harnessed in many ways. The chromatic energy gifted dragons with fire, witches and warlocks with spells and the trolls with a mighty strength, all shared with them by the fairies that painted them and their worlds.

The fairies weren’t gifted with a gift themselves; the paint would poison infecting the fairy population, an unspoken shame. Still despite the unfairness, fairies, channel their resentment into becoming patrons of chroma, learning the power of the paint’s magical qualities, exploring and experimenting with it and still sharing it with everyone, still painting the human realm when they sleep.

Long before now, our world was once united with our neighbouring realms, connecting all creatures and species. Mythically beautiful worlds merged as one. Dragons roamed our skies and seas freely, nomads venturing lands beyond our imaginations and humans and beasts lived alongside one other, becoming the mythic tales we, all still talk about to this day.

But now living in a world free of dragons and trolls, we know, peace and harmony were not to last and days of mythic creatures living with one another were to become extinct, with the rise of paranoia and envy. Our leaders, pastors and clergies, kings and queen rose to rule human lands, righteous, power sieging humans leading with fear, hunted down the might of dragons, the strength of trolls and the magic of witches, extinguishing the lives of our neighbours became sport, filling their chests with victorious sentiment, that we are the strongest race the worlds have seen.

The madness that came with human inferiority led to the evacuation of all creatures and travellers of the realms. The crossings and portal between all the realms were severed, all trust had been corrupted by the human souls, they appeared puny and inferior, but they had foresight and villainy in their hearts, enjoying the hunt and persecution of those who appeared different from their own and so the portals closed, the freedom for the Fairies of Spirata to spread and share chromatic energy, because more challenging, and within the worlds all resources, even within our own have started to deplete. For too long, it seemed like the worlds would slowly suffer and the magical essence of chroma would eventually run dry, affecting all but then the uprise of Achrom a dark magical energy, started to emerge in all our worlds, despite the worlds being separate, illegal organisations and alliances started to deal within the black, tar, pain, ink, the many forms it started to turn up as corrupting everything but gifting dark magic, strength and abilities to it abusers. Now the chromatic age is over, the Era of Achrom is immerging with dark consequence. videos of how much he loved his sibling, his friends, his life and I want them to see him more than a really interesting case, a challenge and then a forgotten case when he unfortunately proved there treatments ineffective.

I want families unfortunate enough to ever be in our position to have a proper shot at killing the cancer that's a 'death sentence' to have a better experience, to have a shot at better treatments, feel their voices aren't being humoured and keep their families whole. I don't know if its achievable but if the system doesn't change, how will we ever know?

It feels like it's only destined to end one way at the moment.