Day +23 in the BMT House

Its been an interesting few days.
Thursday saw a rash appear on legs. I mentioned it to the drs on the round on Friday morning. Could possibly be GVHD. (Graft v host disease. Its where JJ’s cells and the donor cells are having a bit of a fight.) I was asked if I had changed any products that we had been using in case it was a reaction. I had changed washing powder so we thought it might be that. Clothes washed twice to make sure any residue had gone. By the time Alex got to me, the rash had got worse. Cream was prescribed. By the time Monday came it was really clear this wasn’t just a rash. GVHD normally starts on hands and feet, but in true JJ style, it was arms, legs and face. At her very worse, she looked like she had really bad sunburn, without the blisters. Because she is adeno virus positive again, they had major discussions about putting her on IV steroids. This can make the virus much worse and cause alot if issues. It was decided the risks where worth it, so this was started Monday evening. GVHD can be helpful in some types of Leukaemia’s, but not with JJ’s condition. The dosage has since been increased. We’ve had days where she has been moaning alot and generally uncomfortable.

I managed to get home Friday night! Was so lovely to be woken up Saturday morning with a kiss from Caitlin. Especially as normally its ‘mummy get up. I‘m hungry!’ We visitied her friend in GLos hospital in the afternoon as she had had her appendix out that week. (And I got to see my friends too!) Sunday saw us off to a visit Jo for a quick coffee before heading off to Griffs birthday party, which was go karting. Needless to say all the kids had an amazing time. And yes, I got to see some of my lovely friends there too. I was presented with a little bag, but I couldn’t open it until I was on my own as I knew I would cry. When we got to Bristol, I did, and yes I cried. My amazing friend, who is going through a pretty tough time herself, was extremely thoughtful. This past week, I have been shown so much love and kindness, I don’t ever know how to repay everyone. Us Wilsons are a lucky bunch to have so much support from our wonderful family and friends.
JJ started to vomit again sunday. We mentioned that the colour was very similar to when her NG tube had been inserted for far. This prompted an ab xray. Good thing we did, as it turns out she has air in the lining of her bowel. This is caused by infection, use of steroids, fungal infection and all manner of other things. Another first for the doctors. So, was nil by mouth to give the gut a rest and all meds through the IV. This certainly doesn’t help the nurses! JJ’s line time is increased so they are constantly in and out of the room. Her PEG is on free drainage at the moment.
This is JJ having to sit upright for 15 mins before a chest xray is done. She wasn’t happy being disturbed in her sleep, but as you can see she soon settled down. She’s been a star. As usual.