By @enablingevie, Nov 2 2012 02:40PM
So the last few weeks have been a complete roller coaster. Where to start!? I have been really busy with going to lots of appointments that have only been possible because I have so many lovely friends that are helping me. I have found a new lady to see that is much closer to home. The car journeys to Harley Street were too much for me and mummy to manage. Kiki’s clinic is amazing and I really love going there with mummy. My lovely therapist Elke, helps mummy to learn the right techniques to pick me up, hold me, help me to support myself, be aware of my own body and feel safe with movement- including learning to be on my tummy and ‘reflex creeping’ which is like early crawling. Mummy and I do lots of practise at home- its hard work and I find the big ball a bit scary but we manage to have some smiles. There are photos of some of my hard work on my photo gallery page.
I think since I last wrote to you all I have had a few scans of my eyes. Unfortunately there is one very naughty tumour that hasn’t responded to yucky medicine. I had laser treatment on this 3 weeks ago to try and reduce it but my scan today showed that it’s still growing and I had to have more laser treatment today. I have to wait 3 more weeks and if it’s still being naughty- I will have to start another course of yucky medicine. This time, it’s a little more aggressive. It is known as IAM- this stands for Intra Arterial Melphalan and is a specialised chemotherapy treatment which is placed in the main artery of my eye. It goes up through a tube which carries my blood, in my groin and eventually gets placed into the tube that takes blood to my eye. This is a very tricky operation and comes with lots of risks and side effects. I know that my mummy and daddy are very scared if I need this. I heard my doctor saying something about genes and make up and vulnerability to a lifetime of cancer. I thought my mummy and daddy wore genes and make up?? But they were very sad when they heard this so I think I may have got it wrong as I don’t think it’s a good thing.
Life is tough. My mum often says that a clever man called Winston once said “if you’re going through hell, keep on going”. My mummy and daddy are the bravest, strongest, most amazing people I think I’ll ever know. I feel lucky that I have them to look after me. I just wish there were more days where I could show them how much I love them.
Thank you to all those who are continuing to do great things to help me. There have been so many events over the past few weeks including many people “running to the beat”; over 100 people playing netball in weather similar to that of a hurricane; men de-fuzzing their bodies of hair; a great clothes sale in Devon and washing cars in the sunshine at the Fire station. There are still more events happening before the end of the year- check out the events page. Please send an email to firstname.lastname@example.org if you are running an event and my friend Jodie can put it on the website so everyone will know what my heroes are doing to help me. I hope that one day I will learn to say “Thank you “, but for now my smile will have to be enough.