We have just got back from clinic at GOS. It went better than I imagined...we saw Persis Amrollia. I have been worried recently, Jesse has stopped vomiting and is eating and putting on weight but his poo has gone up, he has blood in his stools and lots of tummy cramps. Persis says the steroids treat the upper gut GVHD very quickly (symptoms vomiting, nausea, anorexia), but take longer for lower gut (bowel) GVHD (symptoms diarrhea, blood, cramping). So, Jesse will have to continue on the steroids at this high rate (1mg per kg) for another few weeks, if he improves they'll start halving the dose; if he doesn't they'll double it.
Of course this all increases his risk of infection so we will have to continue to be vigilant, and school in September is right out. At least that means one decision has been made for us, when he does return (possibly in January if this treatment works) he'll go back to Year 2 (we had been considering Year 3).
I was all set for a fight about diet, as the GOS dietitian had been trying to get me to take all wheat and dairy out of Jesse's diet...difficult as that is all that he eats! Jess said if that happens he may as well go back into hospital and onto TPN, as there is nothing else that he wants to eat! I had done a lot of research into recommended diets for GVHD and in the states there is mention of this, also I have proven with my poo diary that neither affects his poo output. But there was no fight necessary, Persis was happy that Jesse had put on half a kg in two weeks and said he could keep eating what he wanted so long as it wasn't too spicy or fatty. That was a great relief!
The most positive thing that emerged today was that Persis reassured me that eventually the GVHD will settle. I wasn't sure if he would have to battle this for years, but GVHD is caused by his donor's T cells thinking he is the enemy. Once these cells have died they will be replaced with new T cells made from stem cells that pass through his thymus and will be compatible. This was an enormous weight off my mind; Derek and I have been driving ourselves mad with worry that it would never stop. We have to hope that we can keep him free from infection as this is the most dangerous aspect, especially as we are now going into winter.
As usual Jesse was on good form for the doctors. He had me in stitches. He threw himself onto the examining bed, took his t shirt off, let Persis examine him then rolled over onto his tummy and said "Ahhh...I really feel like a massage!". He just lay there and after a while (we were having our "serious discussion") he piped up with "Hey guys...I'm still waiting for that massage!" It put Persis off his thread of thought for a minute and had me giggling!
Later we popped in and said hello to the girls on Fox ward, Jesse was thrilled to see Tamsin, George and Kiwigirl! Afterwards we met up with Caroline, Stefan and Red Ruth for some chips and a coke at Cagneys. We had a lovely afternoon!
Other news, our house is starting to look really beautiful, the carpets go in tomorrow. We still have the hallway, dining room and bathroom to do as well as tiling the kitchen and painting the outside, but every day it is improving. We are planing to move on 4 or 5 September, everything won't be finished but the rest can be done when we are in. It is getting quite exciting! It is exhausting too...
Jesse is looking forward to tomorrow, I think he is hoping Hayley will take him back to the Falmer duck pond and a vanilla ice cream from the farm shop...
