Harvesting Joy

We are back from radiation again today. Today was day 7 of 12 and again it was a smooth ride. Tomorrow the Radiation Oncologist will decide if we need to complete all 12 treatments or only do 10 treatments. From the information she gathered at the Boston conference, it sounds like not everyone required as much radiation as Jameson is getting so she is hoping we can cut it short. However, in order for that to happen, we actually need to see improvement and see that his body is not producing the chyle in such large quantities, his girth goes down, and his overall condition starts to improve. As of now, that hasn't happened. Jameson still has a very large girth, is still requiring a number of transfusions(mostly platlets), and still have a lot of chyle pouring out of his chest tubes and belly tube. I would be shocked if they cut the treatments to 10. We are still optimistic that radiation may still work, though; sometimes it can take weeks after treatments have ended before things start really turning around.

Chances are we will start radiating the lungs before we even know if the belly radiation has worked. At this point, we are just so happy that Jameson has remained critically stable. This is the longest stretch we've had since he's been in the hospital where we haven't seen deterioration; there hasn't been any dramatic improvement, but as long as we don't start sliding backwards and his pain is under control, we are happy to have the time to wait it out and see if something begins to work. And pain and sedation have been managed wonderfully this week. Jameson is really under with his pentabarb and precedex and very comfortable. Most days, he just sleeps with an occasional eye opening, lip flutter, or finger squeeze. He isn't really awake at all, but he isn't in pain either. No teeth grinding, no grimacing, no writhing. It is a relief for everyone.
I'm at home with Little Man right now. He has really been struggling the past few weeks with our family situation. I think the stress of everything and the lack of normalcy has really caught up with him. It has been over two months now. Yuck. We are really trying to spend more time with him and have him at the hospital more to see his brother, but it is difficult to ask a 4 yr old to sit on a couch in a room and talk and read books to his sleeping brother for long periods of time. We have started to embrace family movie time at the hospital often; Little Man's brain may just need a little rotting in front of the TV during this time so he can be close to his brother and get extra snuggles with mom and dad. One of the things he seems to struggle the most with is sleeping at night. He and J share a room and he really seems afraid of sleeping alone. We have totally upped snuggle and story time, but I have a hard time deciding when to stick with the rules and when to be a softy...I just keep praying I'm doing the right thing and don't screw him up too much. It is so hard to have my babies in two places. I can't really be with both of them at the same time and I have such guilt and anxiety about the one I'm not with whenever I'm away. I logically know I'm doing a good job- at least the best I can, but it still pulls at my heart strings and I feel so badly for Little Man.
There really isn't any part of this whole thing that is easy. I'm so glad God is carrying our entire family through this time, because I'm not this strong on my own. Hopefully this radiation will start to work and we can start thinking about bringing J home and being a family under one roof again.