It’s been a busy few weeks. I most definitely have GVHD and my skin is a mess. I keep staring at my fingers and toes as they are really funny looking.
Last week I started my first ECP treatment at Rotherham General Hospital. Me and Mummy travelled up on Wednesday and I had to have some blood taken for a cross match ready for me to start treatment on Thursday morning. I have a fancy new line now called a hemo-cath and it has two ports on it.
I also saw Dr Alfred and him and Dr Hartley had a chat on the phone and decided to increase my steroids as my skin had got worse.
Afterwards we went for a walk around Meadowhall which is a big shopping centre nearby. Daddy wasn’t surprised when Mummy said she’d been shopping, he says she loves shopping!
While we’re in Rotherham we stay at a Premier Inn near the hospital and the nice people there let Mummy put my medicines and feed in the fridge so they could be kept cold. I have my own cot there and it’s noisy when I kick it so I get to annoy Mummy all night!
On Wednesday I had my first treatment. It was really easy, I just sat and played while Maggie and Cherie hooked me up to the big special machine. It takes a few hours so I had a little sleep too!
Afterwards me and Mummy went for a big wall and I had a sleep in the park. My grandad doesn’t live too far away so me and Mummy went there for dinner…well I just had my feed because I’m still too silly with food!
On Friday I had another session before me and Mummy hit the M1 before taking a detour via Birmingham Children’s Hospital to see Dr Hartley. Because my steroids have been increased she needs to keep a close eye on my blood pressure. While we were there we popped in to Ward 2 to see my old friend Amanda and the other lovely nurses.
The weather has been really nice but skin is super sensitive so I have to stay out the sun. On Sunday me, Mummy, Daddy and Ella went to a big park. I am in the pushchair hiding from the sun!
I think my new medicines are working because I don’t feel as grumpy and have been a bit more fun to be around…which is good as it’s Daddy’s turn in Rotherham today and tomorrow.
That’s all for now