By @enablingevie, Jan 6 2013 09:22PM
Happy New Year to you all- friends and heroes. Sure am glad to see the back of 2012 and hoping that 2013 can show me how to find comfort and happiness.
Sooo it's been a while since I have been able to update you all. Its been a busyfew weeks.
Mum and Dad had a humungus meeting at Great Ormond Street with all the big wigs looking after my care. They had lots of questions for them. The problem is here.... the horrible C tumour in my left eye continues to grow and decisions need to be made. 2 options- laser treatment to continue and see if having enough of an impact on the tumour to reduce how much all the lickle mean parts of it are dancing around keeping the tumour active OR IAM- intrat arterial melphalan. Mum and Dad really want to help me to save any "potential for vision". Life is gonna be pretty hard for me as it is with my poorly brain- and they want for me to be able to have as much vision as possible so I can see the world around me and learn through sight. Laser treatment has risks that mean it may not treat the horrid tumour enough and may hurt my potential for vision. IAM is a medicine that has it's risks too. Its a new treatment that has been used since 2008 and they have only treated one other baby like me before with this treatment. The treatment involves feeding a tube into my artery in my leg (femeral) through the artery that feeds my brain (carotid) and into the artery at the back of my eye. Then the medicine is fed through this tube directly into the yucky tumour. SOOOO decisions have to be made. My mum and dad are asking for all the information from the big doctors so that they can make informed decisions. They aren't easy to make!
Thanks to all of your fundraising, I was able to get a special suit made just for me. Check out my photies to see it- it's purple, lycra and VERY tight. This helps my skin to send messages to my brain so that I know where my body is in space and I can feel safe. It also helps me to feel safe lying on my back and sit with a good. healthy posture. Thanks soo much to all my heroes and my new friend Sam who helps me fit and adjust my DMO suit as I grow.
In the meantime we spent our first family christmas over at Grandma Laura's and Grandpa Larry's. Grandma Laura made me a bed at her home- she got me a cot and my cot wedge and my cuggly teddy mat to make me as comfy as possible. We had a lovely time being out of the flat. Grandma Laura has a lovely garden and I love being outside- even if I do scream a lot :) It was sooooo very nice to see my mummy and daddy smile - its been a long time since I saw that. And oh my goodness- this guy called Santa did come and brought me some amazing presents. I was a very lucky girl.
After a few days in the Essex air, we came back to london and saw Nanny Lorraine and Grandad Barry where I got spoilt all over again. I'm a lucky girl to have all my grandparents around me.
New years Eve arrived and Mummy and Auntie Jodie took me to have my earry holes checked. Daddy had to go back to work for a few hours. He works sooooooooo hard- my dad. So we arrived at the hospital for 10.30 and the lovely lady there needed me to fall asleep before she could do anything. I had such a nice sleep the night before I just wasn't 'leepy! They were trying all the tricks, lights off, rocking, singing my favourite songs, and then I couldn't fight it anymore and dozed off about 12. Not for long though - I only have tiny little cat naps in the day but in the 20 mins they were able to get 3 frequencies on my left ear tested. They did this by attaching discs to my head and behind my ears and attaching a machine to the discs to measure my brain responses to sound. I needed to be asleep so that my brain wasn't responding to other things! At first the lady told mummy that she wasn't getting a response in the brain stem,but she was getting a reading and so the sounds are getting through somehow. And then Ta dah :) I was awake! As she couldn't finish it, I will need to go back and have the test done under sedation ( I'm used to that stuff!). The reading aren't normal apparently so it will take longer to get the information they need. So they year ended with a little bit of good news- I can hear high frequency sounds in my left ear when loud and clear, the rest is still to be tested!! So all you men out there- you need to raise your pitch so I can hear you :)
A quiet week this week whilst everyone slowly gets back into work mode.
This week- C treatment goes ahead. Likely to be IAM. I know my mum and dad are very scared. Not exactly how they thought they would see my first birthday- recovering from cancer treatment :(
Speaking of which- my first birthday is coming up. I love you all so very much- if you want to help- please sponsor my heroes who are doing crazy things throughout the year to help raise some money for new treatments so I can be more comfortable in my baby skin.
wish me luck this week
Baby Evie xxxx