Day +32

Hello there,
We've been here so long I'm not sure if there is anyone out there still???

Jesse has been much better today. He pooed 1.3litres (that's 1.3kg, over one 20th of his total body weight) yesterday, but today it is midnight and I think he is up to 0.5 of a litre (it is measured from 7am to 7am so we only have 7 hours to go). That is significantly better. I don't think the jelly on Saturday agreed with him. Today he had a teaspoon of mash, he loved it. We have yet another consultant today (the third in 6 weeks). He was very pleasant and knowledgeable. Nick Goulden has spent a long time at the Bristol BMT centre, the only other place in the country on the scale of GOSH. He is very concerned about Jesse's GVHD. He should have responded to the steroids by now, if he doesn't then he has "steroid refractory GVHD", this means it is resistant to treatment by steroids. What they want is for it to respond and then to wean him off them. The longer he is on this higher dose the worse it is for him. At the moment what they are doing is switching off his immune system as it tries to grow, sooner or later he will get an infection, which will be very serious.

So today they told me they are back on to the emergency biopsy route. They want to be certain it is GVHD and to know exactly how bad it is so they can plan treatment accordingly. They will also look with a camera so they can see what is going on. He is booked in for Wednesday morning, and in advance of it they will give him Senna and Picolax to completely clear him out. It seems unnecessary as he is as empty as possible already but apparently that's the protocol. So it will be poo city here tomorrow. Poor lamb has been desperate to eat all day, dough balls, pitta bread, watermelon and peach buns are still top of the list! But he is happyish with the mash. I have taken him off squash and put him on water, it is better as he has hardly had any because it doesn't taste as nice. But of course we will be on nil by mouth tomorrow. I am really hoping that by the time we get the biopsy results (probably next Monday/Tuesday) he will have significantly improved so we don't have to go the Mabs antibody route. I will expand on that further when it is more likely...

Bernie is a lot better from his cold, but his nose is runny and he is coughing a bit. So I won't see him until the weekend at the earliest. He had a lovely time at the childminders today, he even waved goodbye to Derek so that is a breakthrough and a relief. Jesse was in fantastic spirits today. He had me awake before 7am, insisting that I open the curtains and wake up. At 8am he was so restless that we went on a walk almost all the way to the lifts in the main corridor. He loved saying hello to the nurses and all the attention. We had another walk to the lifts before his lesson (which he enjoyed), a couple of 10 minute naps and then a third walk to the lifts this afternoon! It may not sound like a lot but bear in mind he is very thin, his muscles are wasting because of the steroids and he has a medicine stand with 5 pumps attached, at least three bags of fluids and a couple of syringes that are permanently connected to both his Hickman lines. which has to go wherever he goes. So it is in fact a major achievement! Jesse is finding it very hard to relax and to sleep so I am going heavy with the lavender oil and doing my best to tire him out. We had a final walk this evening at about 10pm. We made it to the lifts and then in a moment of recklessness decided to get in one and go downstairs to look at the shop (that was closed). We had great fun! OK, that's all folks! I'm off to bed, wish us luck for tomorrow and Wednesday, and by the way, thank you all for the cards you sent, we have them stuck all around the room...
Lots of love,
Claudia
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