Today Fiona was visibly shaking when it was time to stick her. The nurse who was here to teach me how to use the new pump saw it too. I really don't like seeing Fiona so scared and anxious. I premedicated and used numbing cream. Once the needles were in she was fine for the entire infusion.
We go to Cincinnati tomorrow. I'm looking forward to seeing the Ronald McDonald house. I'm anxious to find out what they have decided about transplant. Waiting for someone else to decide the future of Fiona's health has been difficult. It would be nice to have a decision so we can plan our lives. I'm very sure we will eventually end up there, so my feeling is let's get it done.
Tomorrow James and Abbie have to get labs drawn. In addition to the genetic match there are viruses that the doctors want to see matching viruses also. If Fiona is negative (or positive) for those viruses they want her donor to be negative (or positive) too. Knowing that they aren't going to like having blood drawn has brought out some nervous feelings for me. One of them is going to endure some pain to save Fiona. How do you explain that to a child. I think Abbie is more emotionally prepared for it. If I got to pick my trials, these would not be the ones I picked.
Fiona likes to stick her arm inside my sleeve so she can touch my arm for comfort. I think it started when she was in the NICU and they suggested skin to skin contact. On treatment days she needs a lot of comfort. Having a small arm stuck inside the cuff of my sleeve means that I don't get much done on Mondays. I can't wait for short sleeve weather!