Friday, 7 February 2014

Reality hit

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.

Our Journey..Strength..Courage..Hope

My next blog will be a fun one, I promise.


  1. We're with you in spirit through every step of your journey guys. It's great that you can get out and do the fun stuff too, please keep posting - it's lovely to know that you're getting out and about. Lots of love to you all xxx

    1. Thanks hon - looking forward to seeing you guys soon. Thank-you for your donation to CLIC Sargent too xxx

  2. Keep your spirits up, you are being so strong for him. Wishing you a Happy Birthday for tomorrow, Alison from windy rainy England. Big kisses for all of you and hope Joel is well enough to celebrate your special day somehow. Looking forward to pics of a huge cake and giant coke...sundae...cookie...the list is endless!!! Must Skype you soon. Will try Mon of half term, next week at 4 ish our time. Ssee if we catch you. Love and hugsxxxxxx

  3. Thinking of you all as we start half term in a very wet and windy Cornwall. Xxx

    Jackie (Penair)