11.12.2006

Roller Coaster

Last night I resolved to begin posting near daily entries here. If ever there was a time to give a real effort to this experiment that is "Cancer Dad", that time is now.

Yesterday and the day before were really tough. With Nathan in the hospital and Susan needing to nurse Lauren before bed and when she gets up, I have nightly hospital duty. Susan and I see each other in passing as we swap sitting with Nathan and hanging with Julia and Lauren. Despite really bad sleep, I'm holding up pretty well with the hospital in general. The first two nights Nathan was up coughing all night and we didn't sleep. Since then he has slept, but is up at least three times a night to use the bathroom. We can also count on a handful of nurse interruptions. Yesterday and the day before things were really getting hard on everyone. Lauren was hating not seeing her mommy during the day. Julia was acting out. Things are so hard on her. She can't see her brother. She gets shuttled back and forth between the Ronald and the hospital. She has zero control over her actions and time. And I'm sure she feels like a second class member of the family with the attention Nathan gets and the attention Lauren, as a baby, demands. So, the weight of this hospital stay was definitely getting to us.

Today I felt differently. Nathan had two good days where he was playful and good natured. Yesterday Susan seemed to have a nice day at the zoo with the girls. Today I had a really good day at the Ronald. We had a nice brunch, Julia got to do crafts, Lauren napped so I could easily shower, and I had some really nice talks with families in the house that I really enjoy. After Susan and I switched roles for the night, Nathan and I watched some of a NASCAR race and he was tired but really trying to stay up to watch some of tonight's football game with me. He is rooting for the Giants because he loves New York so much. I'm, of course, rooting for the Bears (who are off to a bad start on their first defensive set of the game as I type this) and he was having fun about cheering on the other team.

Things turned when he had to get his nightly shot and was getting tired. He was so sad. He kept saying, "Why do my counts have to get better before I can leave" and "I hate my stupid fever" and "I hate stupid counts". Then he drove it all home with, "I'm so sad. I just want to go home". I don't think he meant back to the Ronald either. We are really struggling with how to keep fighting and keep his and our quality of life as good as it can be. This trial was so promising, but we didn't expect to be away from home this long or for him to be in the hospital for any prolonged period of time. It really, really sucks for all of us, but especially for Nathan. Poor beat up guy just wants to go home. I promised him that when it was safe for him to travel that I would take him home. I hope I can deliver on that one.

I cuddled with him while he sobbed. Then a show came on recapping today's football games and I told him who each team that was playing was and where the cities were. He would pick who he wanted to win and then when the recap was done we would see if his team won. He perked up and was having fun watching the show and hiding under the covers. He wanted to stay up for tonight's game but he crashed and fell asleep just a bit before kickoff. At least he was in better spirits.

I really want to be able to take my family home. All five of us are riding different emotional roller coasters right now. It takes a huge toll on us all and it is hard being at different places on the ride at different times (although I suppose it is good that we aren't all at or lowest lows at all the same time usually).

1 comment:

Matt said...

Sorry I've not been following lately. So sorry to hear about Nathan's (and your) lows lately.

Tell him that the NY Giants once had teh best player I have ever seen -- Lawrence Taylor. LT always played my team twice every season, so it's wasn't much fun for me, but he was spectacular to watch. I've never before or since seen a defender make an entire game be about him. Maybe Deion Sanders, but as a cornerback, just couldn't affect as much of the game. LT was the one and only focus of your offense in a way Jordan was in the NBA.

Even Joe Montana didn't command as much focus and respect as LT did when he was firing on all cylinders. The cocaine probably helped, but that's probably not for your discussion with Nathan.