2 months in. 2 bloody months. Little did we know at the start of this just what having a child with cancer actually meant. Those first days after George was diagnosed almost seem easier, were easier, compared to the last 7 days and nights. The strength that George built has been evaporated by constant pain. Or strength is at breaking point, for me I’m actually scared it’s broken. To have a child, your child, look at you and demand and then as the pain intensifies beg you to stop it, and all we can do is wait the 20 minutes for the machine to allow us to push the button and give him more morphine is soul destroying. Even then at its most intensive the morphine doesn’t touch it. Every one of those minutes he holds you so tight, tears rolling down his face, his body shaking and shuddering, his little face right next to yours staring in to your eyes, needing it to stop, this is your job daddy – make it stop, make the pain go away….now daddy! The pure intensity of agony he is going though is something I will carry with me forever. This won’t become a distant memory. His screams are that of a new born baby, that shrill, the shaking voice, the high pitched tone, the horror he feels. I have to, I have to keep reminding myself of this, I have to use this for something, I have to know that it wasn’t for nothing.
The nursing staff are amazing, for George and for us. Many have cried with us as he screams that ‘this is a disaster”, that “I need help”, “take it away away daddy, take it away”. To see a child so small, so contorted with pain is a ‘disaster’, it should never be allowed. I never understood the true meaning of what cancer is until the last hours. The suffering this infliction causes right down to your soul. How it is taking away the spark that is my little boy. The cocktail of drugs he is now on to suppress the side effects of the drugs that are there to make him better is mounting. Right now he has a fissure in his bottom, he has an infection there too, piles, stomach cramps, constipation – he is too scared to go to the toilet for fear of the pain. But every time his body tries to do what it does naturally, that is when the pain hits, that is the start of an ‘episode’, we get ready, we position ourselves for what is about to happen.
He has been battling this for 7 days, mentally he has continued to get worse, he doesn’t understand why he is in so much pain, he can’t comprehend any of this and for us we are helpless. We have to wait for the drugs to work, for his nutrophils to start working again so that his own body can start to repair the damage but that could be 2 weeks away, between now and then he will need to fight this, he is, he is for every waking lucid moment, and in every drug fulled sleep when even then, his dreams are asking for help, to not touch him, to make it stop. This is childhood cancer. This is still only 2 rounds in, how are we ever going to do the other 3. Do I have enough tears left, because that is all you are left with at the end of his bed at the end of every ‘episode’.
We are on a specialist ward, we are scared for how long? There is a critical shortage of beds for child oncology patients across the country, we have to accept ‘shared care’, we have to step down (their words) to our local centres. The system is the next fight, we have to beat the system to make sure he has the very best of care, anything less is unthinkable for a child who is suffering to this extent, on a protocol as aggressive as he is, with a disease that won’t go quietly, he needs to step up, not down, they need to help him, they need to stop this being the ‘disaster’ he keeps screaming it is.
Thank you for the love you continue to give us. Thank you for allowing us to ‘share’ to raise awareness, for the mobilising of a community, for the events and for the superhero’s who are running, music that G is enjoying, for the pint in the pub, for making us a lovely dinners, for listening, for the presents; all of this makes Georges future a lot brighter and a little easier for the rest of us. Thank you also for the 500+ people that have either donated blood and platelets or are donating or swabbing for George – lives are being saved because of your generosity. And to the many 100’s more that would like to donate but can’t for so many reasons, just that you considered it gives such strength and fuel to the fight – thank you.