Day 21

Mommy and I both struggled today. I mean, I guess it's difficult for her to see me with an extra 8+ pounds on me, my stomach all bloated, my legs chubby, and my face looking like it's going to pop. My hair is all over the place (except on my head), so Mommy decided to use the scissors to trim up my hair. I now have a spike in the back and a comb over in the front (so I can still wear my bows). I also got Mommy up at 4am, telling her I wanted to eat. She made/got me grilled cheese, chicken noodle soup, two bowls of Cheerios with milk, some M&Ms, a cookie, and a few other things I've forgotten.

Good news! My ANC was up to 510 this morning. Yippeeeee! If only it would stay up after my chemo (Vincristine) today. You never know... maybe my bone marrow will kick into overdrive.

I was really irritable all day, and screamed "OWWWW!" whenever someone new walked in the room (especially if he/she was wearing a white coat). I didn't want to play or be touched at all, and Mommy thought that maybe my skin was just really sensitive. She met with the "pain doctors" to see if there was something that could make me a little more comfortable. After their assessment, they concluded that I wasn't in pain, but I was really irritable (duh, I could have told them that). They said that many patients on steroids have this irritability, and they decided that they would start me on a medicine called Clonidine. It is typically used to treat people with hypertension, but in lower doses, it can help with irritability. If it works, Mommy says she wants some, too!

Unfortunately, I didn't have any procedures scheduled in the OR, so I had to have my PICC line dressing change in the room while I was awake. Brandi from Child Life and Brian and Beth, the music therapists, came in to help with some distraction. I screamed and cried a lot, but Mommy and Daddy said they thought it went a lot better with the additional distractions in the room. Music surely does make everything better. They had some cool ocean drums and a tongue drum, as well as their guitars. Those drums really sounded like the surf rolling in and out (I know, because I remember going to the beach with Nana and Papa last summer).

Since we aren't likely to be discharged from the hospital this week, my new nanny (Laura) didn't drive here today. She is going to leave early tomorrow morning and come to the hospital to see me. I can't wait to meet her; I think we're going to be good friends.

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