We're Here

We made it here at about 6:30 (We were half an hour late due to a stop at Mc Donald's for chicken nuggets---so worth it!) We got settled in the room for about 30 seconds before the nurses came in and wanted him stripped down to weigh him, and to do vitals. Brady really remembers this place and instantly started pointing at the door and saying "out." That was really heartbreaking. We met with one of the oncologists (not our usual one) and I feel bad for her because I just started asking all of our questions. I asked when they would be retesting his catecholamine levels (a urine test that is elevated in people with neuroblastoma--his levels should be decreased if the chemo is working). They put a bag on him to collect his urine, not sure when we will have those results. They told us they would be giving him decadron (the dreaded steroid!) and I just looked at her like she was crazy. Decadron is used as an antinausea med, last time he was taking it prior to starting chemo as a drug to help with post operative swelling. By the time the chemo started his dose was very low. They wanted to start with a small dose and increase to a huge dose tomorrow. If you remember though, he had a lot of adverse side effects (sweating, irritable, swelling, weight gain due to increased appetite). Let's just say we went back and forth on this one with her, and it was decided that he won't be getting it unless nausea is a problem. Our whole philosophy is that he did so well last time, let's just do the same drugs again. We don't want to add anything new unless we have to. I also "fessed up" that I had called Sloan about the possibility of doing the scans there. They looked surprised that we would do that and said they don't really see the benefit. I'm going to see if Sloan calls back tomorrow, if not I'll try again. I guess that decision will be ours.

I asked the doctor about hair loss. She said it would start anytime. After she left I put on Brady's pjs and I noticed hair all over me. It is Brady's hair, it all of a sudden started falling out once we got here. I just broke down at the sight of it (I left the room of course). You are probably thinking, "it's just hair, it will grow back, you knew it was going to happen, why are you so upset?" I just have a hard time knowing that he will now officially "look sick." On days he is feeling well it is so easy to let my mind forget that he has cancer. He looks like Brady, plays like Brady, smells like Brady... Now he won't look like Brady. I've seen cancer change people I love before and they don't look like themselves and it is a daily reminder of the illness inside of them. So that is why it hurts me so.

Matt is here now. He and Brady are snuggled in the chair watching basketball. Brady is getting 2 hours of fluids before the chemo will start. Matt will head home in a few hours. We are praying for a peaceful night...