Day 2

Written by Johanna…. Life on 6 West is quiet. The halls are empty of patients, as they are all in their rooms. The nurses sit quietly at their computers charting while they are not in the patients rooms. A housekeeping employee or two walks about, always cleaning…

Cabin fever is starting to set in a bit for Mommy. A guy volunteer was around today and stopped in to play with Ethan. They played Star Wars while I escaped to a “big” CVS today outside the hospital to buy some luxury items: LUNA bars, mouthwash, scissors, a sketch pad for Ethan, some refreshing juices, and dark chocolate.

Ethan napped from 3-7pm, sleeping through a visit from his favorite nurses on 6 North. That was the highlight of my day, chatting with them…their very nice, personable, caring, fun…we miss them, both Ethan and I.

There is a kitchen on the floor…I go there to get Ethan’s waters (he can only drink Dasani bottled water), make my morning coffee, heat up my dinner, etc. I meet other parents in there frequently (there are 12 other families here)…hear their stories, the stories of their children’s fights, learn of other kids “counts”, and when the might be going home, and then I also hear the stories I don’t want to hear, the journeys they didn’t choose to live, but are…first transplant, second transplant, back after second transplant, “we had a couple good years”…One thing we all have in common…HOPE…we all have hope…

Ethan got out of bed this evening and played his Wii – boxing, tennis, baseball and golf. He got some really good exercise. His new green scooter came today in the mail, we bought it for him doing a great job for his total body radiation. We rearranged the room to make more space, but the problem was the 10 tubes and IV pole that he is attached to. We’re hoping for maybe 10 minutes of unhooked time to try it out again another day.

Meds are more difficult every day…one in particular, and it’s taken 3 times a day. Ethan shouts, “I am trying my best”, and he is, poor thing. Essentially it makes him throw up the first time, and then we have a second one ready to take right after he throws up, which is the best time to take it to keep it down. I would get tired of doing that too, I don’t blame him. And then it hurts his tummy for an hour afterward. He’ll look at the syringe, say “I am stronger than you”, and then squirt it in himself. This is really the only time throughout the day he throws up.

Daddy went back to work today…he is feeling better…starting to eat again. Hopefully next week will be okay for him to come in. We miss him!