Well, I had hoped I was home to stay but my GVHD seems to have other ideas. I started getting a bit of a cough and cold a couple of weeks ago and that seems to have caused my GVHD to flare again as about a week ago my face started getting red and it’s breaking down now. I have a couple of new patches on my body too.
Daddy took me to Rotherham for ECP last week and Dr Alfred had been hoping to reduce my steroids, but instead I’m now on 10mg everyday to try and get the GVHD to back off. As a result I’ve only had one happy day which Mummy, Daddy and Ella loved….but since that I’ve been pretty miserable and sleeping lots. My cough keeps waking me up at night though so Mummy and Daddy are getting very tired! I’ve sicked quite a few NG tubes out too and decorated both Mummy and Daddy, oh and Ella too! I like to spread the love!
My eyes are much the same but behind the scenes at Birmingham Children’s Hospital the opthalmologists are arranging for me to have some eye drops made from filtered blood which will hopefully help and I should get these soon. I’m going back to BCH on Friday too so the opthalmologist can have a look at my eyes when I’m asleep and he might block my tear ducts to help my eyes keep moisture.
Mummy and Daddy are watching me like a hawk and Mummy and Dr Hartley have been speaking and emailing lots about me. I want to stay at home but if my skin gets worse I’ll have to go back and that might mean spending another Christmas in hospital and that’s not what me or my sister want.
I need to go have a nap now.