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.
My poor sore face
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!
Me and Dadda
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.
Me and my lovely sister
I need to go have a nap now.
I’m still in PICU, my longest stay…even after I had my transplant!
Managing a little play with my eyes closed
The good news is that my skin is healing up well after my last flare up. I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells! My eyes are much the same and the opthalmologists are checking my eyes regularly.
Me a week ago
On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s! Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there! Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!
I'm slowly getting rid of my bandages and I'm getting long legs like Daddy
The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections. Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator. Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!
In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!
Me and Oleg!
That’s all for now, I’m going to carry on snoozing!
Lots of love
Oliver’s asked me to do this week’s blog as he’s feeling a bit poorly.
After last week’s visit to Rotherham for ECP Oliver seemed to be doing well and we managed to wean his oxygen down last weekend. We even managed to enjoy a few cuddles and Oliver was able to sit up and play for short spells.
Enjoying a nice cuddle
During Sunday Oliver’s skin got progressively redder as the day went on and he spiked a temperature. Overnight his skin blistered on his face and neck with new rash appearing on his leg and we knew his GVHD was back.
Oliver being cheeky and trying to get his sats probe
On Tuesday Oliver went to theatre for a dressing change and also to have a new hemo-cath line as his was playing up but struggled with his breathing when he got back to the ward so was quickly assessed by PICU and taken back to PICU and put on a ventilator so we decided to make sure we were all together so Paul and Ella came over after school and Ella had 2 days at “hospital school”.
At the same time we were told by Dr Hartley that as Oliver’s GVHD was flaring up again we only had one more option for treatment and that was campath.
We had been told about campath before and were very reluctant to let Oliver have it as it has a lot of nasty side effects but our main concern was that it would wipe Oliver’s immune system completely leaving him without any defence against infection. When campath had been mentioned before we had other options with steroids and mesenchymal stem cells but as these had not had any real effect we decided campath was our last option to try and so on Wednesday Oliver had his first dose of campath. Thankfully he did not develop any side effects and we expect him to have a further dose or two next week and hopefully this will stop the GVHD attacking his body until he can resume ECP.
Back on PICU again
Oliver went back to theatre again on Friday to have his dressings changed and was also seen by the opthalmologist who was concerned that his left eye was deteriorating because of GVHD so he is now having ointment in both eyes every hour to try and help. Oliver’s skin is now very sore and raw in several places so he’s sedated to keep him comfortable and also to keep him from trying to pull his ventilator tube! We had hoped to get Oliver extubated this weekend but he’s needed more breathing support and we’re hoping he doesn’t have a chest infection.
It’s certainly been an eventful week. Here’s hoping things improve soon.