A little bit of a reality hit this morning. We don't really think too much about Joel's tumour - we go for treatment and then leave straight after. Block it out and carry on. But today, we stayed on a little bit longer as we got chatting to a couple of people we've become friends with. Everyone here has so much to deal with when you listen to their story, you feel quite lucky when you listen, and then it dawns on you, you realise that we too are one of them. We too have our own story.
A 9 year old girl with a tumour in her pituitary gland, 15 hour craniotomy to partially resect it, then here she is having proton after the remaining cells continued to grow. She has a life of hormone therapy ahead of her due to damage to the pituitary gland. Her mum struggles to get the level of meds right to control functions such as thirst and temperature regulation.
A 5 year old boy with a tumour in his brainstem, the area which controls the most basic functions such as breathing.. staying alive. 8 hour surgery to resolve hydrocephalus. Too high a risk to operate on the tumour itself. Chemotherapy not highly effective, so he's here having proton. That's our story. So he's doing well now, but dwell on it, dare to think about the future? What if we're the 30% it doesn't work for? What then? That's why we don't think about it. So forgive us if we post blogs about all the fun things that we are doing, but we are filling our days, blocking out the conversation we don't want to have. Burying some of the conversations we've had and the things we've been told, and holding onto others.
My next blog will be a fun one, I promise.