The Battle Within

So after being admitted yesterday and getting our room assignment, we spent most of the evening sitting watching movies and playing in the playroom. We are, for the most part, comfortable. The room is ample and private. I'm writing from the room now as there is internet access. There are myriad resources for children to be engaged; little bikes for the hallway, crafts, toys, games, crayons, movies, and I think there's supposed to be a clown coming by later. Henry's already terrorized the halls with the trike!

It wasn't until late last night that he was started on his chemotherapy. The first one they administer is called methotrexate. Its supposed to be the most helpful. They've also given him, and will continue to give him weekly at our checkups, vincristine. He's receiving an anti-nausea medicine as well. There aren't any visible side effects right now aside from having to pee a lot. They capture everything and measure it every two hours to ensure he's clearing everything well. We're not allowed to use the same toilet as him and must use gloves to help him potty or change diapers. Apparently it can be toxic to us by contact. We basically wait until it clears his system - sometime late Sunday or early Monday. Once his levels normalize a bit, then we'll start the other treatments.

Because he's beginning to be immunocompromised, he's got to wear a mask when he goes out of the room, and others wear masks when they come in. It makes it difficult to recognize people and its a little off-putting for Henry when they first come in, but as with everything, he's getting used to it.

They let us order pretty much any kid food imaginable from room service for him - unfortunately he's not got much of an appetite. Most recently, he's interested in macaroni and cheese. He sat up and ate like a champ. We figure alot of the foods just don't taste right. The cells on the tongue apparently are affected because they are fast growing as well.

While he looks just fine and is only a bit uncomfortable, we know the battle within him is raging strong. Its strange to be sitting and waiting. It would be easier in a way to be actively engaging in the fight, but right now we feel mostly like we've jumped off the cliff and are just waiting for the parachute to open - may as well observe the beauty of the clouds as we drift by.