Day +29

It has been a strange day, a real roller coaster. We started off very low, Jesse was awake every hour through the night. He was so hungry he couldn't sleep, he kept talking about dough balls and watermelon. I found it so distressing, it was heartbreaking to hear his softly spoken pleas. We had our lovely nurse Sally on last night. She could see what a state we were both in. So she asked a more experienced nurse to come and talk to me about the antibody therapy. There was no record of this as a possibility in Jesse's notes so she was surprised but reassuring about it. I mentioned to Sally how intimidating the ward rounds were, she knew exactly what I meant! We talked to Jesse and suggested that he should talk to Paul Veys in the morning. Jesse agreed it was scary when they all come in so I asked him if he would prefer it if only Paul came. Jesse was enthusiastic about this and agreed to tell him how hard it was to be so hungry and not allowed to eat. So we concocted a plan. Sally wrote this down in the notes and emphasised how distressed Jesse was. She handed on to the day staff that we wanted a one to one meeting.

Later on in the morning Paul came by on his own, and was unable to say no to Jesse's request for food, it was so heartfelt! When Jesse said "Thanks" to him he melted and I fought back tears. If the diarrhea gets worse it will have to stop, and Jesse can only have small amounts of very specific foods (no wheat, dairy or soya). Paul was a lot more positive about Jesse and the GVHD too. They have booked a biopsy of his gut for 16 March, as the theatre slots are hard to come by. This gives us two weeks to get Jesse a lot better. If he is clearly on the mend they will cancel it. Then they will use the antibody therapy only if the GVHD isn't responding to the steroids. I have a promise of full discussion of the pros and cons in advance including a paper one of the consultants Dr Rau has presented all over the world about this. So I feel a lot more in control and so does Jesse.

All he has eaten is a few bites of Energen bread toasted and a teaspoon of mashed potato, but he enjoyed every tiny mouthful and he has been much happier. He is restless this evening and is finding it hard to settle. He hardly slept today so maybe he is overtired or his gut is feeling a bit strange...

A couple of messages...Leo, Jesse isn't impressed with Skippy's antics one little bit. He agrees that Kipper would have thought of a much better hiding place, and no way will Kipper be joining the Penaut Butter Liberators, he has better things to do! Gaby, welcome home! Yes, we do love mulberries a lot...maybe we could have a tree in our new house? Looking forward to seeing you next week.
Love to you all,
Claudia
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