Harvesting Joy

Jameson has been doing so well with his sleeping and waking the past two days. Last night he slept through the night and he is still sleeping now. He wakes up and looks around for a few seconds and drifts off again. He is so stinking cute. We has also been having decent awake time during the days without a lot of pain. He still has his moments of stomach cramping, but overall, he is doing well with pain management. We've been holding him every day for an hour here and there. It is quite a production and takes a few people to hold lines and limbs and tubes to get him from the bed to the chair and back again, but it is well worth the effort. Holding him is such a gift and we are so thankful for every moment with our sweet baby J.
I jinxed him by talking about not needing blood products in that last post. Sigh. Later that day he had a bloody stool and needed packed red cells and platlets. He is getting platelets often, as well as chryo to help with clotting. He is still having bile and some bloody drainage out of his NJ (feeding tube) at times. Feeds are still stopped but I think the plan is to start up very slowly today and see how his gut handles it. I guess we'll see how that affects belly pain and cramping.
His white count is down to .3, which is really low. We suspect tomorrow he will be under protective isolation and everyone coming in will have to gear up in masks, gloves, and gowns.
Jameson has developed some kind of rash diffusely over the past few days and we aren't sure what it is or what is causing it. Go away, rash! We have enough to deal with already!
We still haven't seen any definitive signs that radiation has worked and Hubs and I have decided to hold off on chest radiation until we see some results from abdominal radiation. Jameson has so much wrong, but right now his lungs aren't part of the problem. And radiating them may very well take away his ability to ventilate well. At this point it seems the that the risks of radiation outweigh the benefits. Hopefully in a week or two or five we will start seeing positive results from the abdominal radiation and we can then start plans to move forward with chest radiation. We just pray Jameson can just keep fighting and give us the time we all hope will help. Hubs has read that it can take up to 6 months for radiation to start helping. God, please give us 6 more months.