This blog has taken a long time to write and I am unsure if I will publish it, but writing my feelings as well as facts, has always helped me process things better.
My heart has broken, Emelia grow her angel wings at the end of September from ARMS Alveolar Rhabdomyosarcoma a cruel disease. She fought it to the end, in such a dignified and stubborn way, finally giving in on the 24th September, just over 3 weeks after being told she was terminal. I know at this point she would want me to talk technical as its important in understanding the disease a little and to what happened. As she isn’t here to help me with this bit, I will try to explain my understanding (sure she will be cursing me right now as I either spell something wrong or not get something quite right – we used to drive each other crazy, she being a perfectionist and me most definitely not, but I will give it a go).
So the primary cancer was ARMS, it was situated in the sinus cavity and had grown round important areas as we know. This was and had responded really well to treatment, the proton beam radiotherapy had done a great job (we will never know if it had got rid totally) the consultant believes that the dodgy cells had already moved to Emelia’s membrane around the brain and spinal cord perhaps even before treatment, I think these new clusters/tumours are meningioma, a type of brain tumour. I believe that the chemo she had was delivered through her blood supply, which these new cells were not attached too, so her chemo wasn’t able to target them.(as I say this is only my understanding i could be wrong) however when they found these new clusters/tumours they talked about chemo not hitting them and trying some other type of chemo which they use on brain tumours as it breaks through the blood vessels. She had 1 round of this, as she wanted to throw everything at it. We believed this would hopefully give her more time.
The truth is hard, she was in a lot of pain around her neck and back. They started her on a high dose of steroids and medication which helped her headaches. And she was on anti seizure drugs as well all eventually delivered via a syringe driver. It felt like we managed her pain well for 24 hours and then, it got worse so we never really seemed on top of it, for a week or so. The palliative team were involved and worked hard, visited every day, near the end we found the right pain relief for Emelia so I know when she slipped away she wasn’t in pain. Although we hadn’t had a conversation with Emelia for a week before she left us, we played her playlist and Harry Potter. She had Theo her dog and both me and Mark with her, Harry Potter playing when she took her last breathe, watching her go was heartbreaking and so unfair, we were with her when she was born as well as when she died 😔 Its the wrong order of things, we should have gone before her. If only……