I hit the wall last night. We hadn't slept much the night before and it was a bit of emotional day anyway. It was Lauren's first birthday and we couldn't be together all day, but we got Nathan out for a few hours on a pass. The day itself after our normal morning changing of the guard was insane and exhausting. Read about that here at A Night in the Box. We had a nice little party for Lauren. We were all there and that is what is most important. A few other kids from the House and parents came. It was nice and quiet for the most part. Nathan wasn't feeling great. We had dinner as a family in the room. The kids just couldn't quite handle all of the emotions and it wasn't as fun or as good of a time as I wanted it to be. Nathan wouldn't pick something to eat. Julia cried at every little thing. Lauren hates dinner and was cranky. I'm glad we were together, but some of the being together wasn't much fun. That sounds terrible to say. But there it is. There were some high points in the day, but it seemed to last forever.
I brought Nathan back, dropped him in the room, and went and sat in the room that is called the "family center" but is something like a lounge for parents for awhile. I still wasn't very recharged, but settled in for the night exhausted.
I now have a new favorite nurse. Gabby is awesome. Amazing. Nathan's pump beeped exactly zero times during the night. She either programmed it right or was so on top of it that she came in to check on it before it beeped with each medicine she hung. It was fantastic. He woke me up to help him get to the bathroom. I noted that I had slept for a solid chunk of four hours and that was the longest chunk of sleep I had gotten in over a week. We settled back down and the next time I woke up was five hours later. I love Gabby. We have her again tonight.
Today was fine until it really sucked. We changed the guard just before Nathan's scan. My plan was to let Jules play for just a bit before heading back to the House. Her friend Sophia was there again and they had a great time in the play room. Lauren was happy for a long time too. I ended up letting them play. Then when Lauren got cranky I put her to sleep in the stroller and talked to Sophia's parents for awhile. They are a great family and I like them a lot. By then it was nearly time for Nathan's bone marrows to be taken and I knew that they would be done in the procedure room and I would get a chance to see him and Susan on the outpatient side, so I just kind of ended up sticking around. It is all good. Julia loves the play room and it is good for her. There isn't much for me at the House anyway.
If you read Nathan's journal, you will know that the preliminary scan results aren't good. Susan saw the scan and said it looked about the same to her. The onc agreed. We will get an official report next week. This is pretty terrible news really. He is number 1 patient on this study, so we couldn't expect great results, but it seemed like our best shot at a therapy that really could pack a punch. Nathan's body just hasn't handled it well and he has been down and in the hospital. Now we find out that after the first round had really good results that this second round may have not done much at all. It is quite a blow. I was feeling pretty down on the way back to the House and had another encounter with the bag lady at McDonald's (I know, Jill O, I gotta relax on the McDonald's workers, but it isn't really about them you see). Susan and really haven't talked things over too much yet. We will have some big decisions to make next week.
Nathan was in pretty good spirits this afternoon and evening. We will take him out on a pass again tomorrow and hopefully have a few good hours and dinner together again.