Harvesting Joy

So good to have the pain meds working and a calm and comfortable child. Although, calm probably isn't the right word....comatose works better. I'm not sure if he is technically in a coma, but he is low enough that they are doing continuous EEG monitoring to make sure they don't bring him too low.
All of the nurses who have looked at his trach site today think it is starting to look better. Having him still and not moving his head around and not being in constant pain and discomfort seems to be helping him to heal, which is a great thing. Back to the EEG for a minute: He has electrodes all over his head with a white fishnet stocking over the top of his head and all of the wires coming out of the top of his "hat" and it just reminds me of an onion. What a sweet onion he is. :)
The big news of the day is radiation. We met with the pediatric oncologist and the radiation oncologist this morning and are going ahead with arrangements to start radiation sometime next week. We are still thinking about the idea and letting it sink in, but from the reports we've read, it seems like it might be a promising therapy to try. We are in uncharted territory, prayerfully stumbling through the darkness, hoping we make it down the right path.
The first step is to get a CT Scan this week and the radiation oncology team will look it over and make a plan on what to radiate. His disease seems to be fairly diffuse and they can't radiate his entire body at one time. We all seem to think the disease is doing the most damage in the abdomen so he will mostly likely undergo radiation on his entire abdomen for 13 days at a low dose. If it works and he doesn't have really bad side effects, they will give him a week or two to recover and then start the process on his chest. The oncologists all seem to think this is a less risky option than Avastin at this point and think this is our best next course of action.
I understand that radiation is a risky procedure, but the part that scares me the most is the daily field trip to Abbott to do the procedure. Every day they will take him down to the basement and through the tunnels to Abbott, he will undergo his radiation treatment and then come back through the tunnels to his room. He is much more stable than he was the day he coded in the MRI room, but field trips still make me nervous. The doctors all assured me that he will have quite an entourage the entire time as well. Man, I hope and pray this works. I really want to bring my baby home again.
Again, we humbly ask and thank you for your prayers. We are so grateful for your enduring support and love as we continue on this journey. God Bless you all, Meghan