10.23.2008

Day 2

We all got a terrific night of sleep last night! I even slept through some of my vital checks. Poppa showed up to visit before going to work, which got a big smile out of me. Right before "rounds" in the morning, our neighbor Karen dropped in to leave a tub and bag of goodies for Daddy, Mommy, and me. That was so nice; we have great neighbors!

We stepped outside in the hallway to listen as all the doctors and nurses talked about me during their rounds. I found out that they got some good news from the BMA they did on Tuesday. I have a genetic mutation called "TEL-AML," which means my 12th and 21st chromosome are reversed. Having a mutation sounds pretty cool to me, and Dr. Pope explained that other kids with leukemia who have this same thing have a 95% chance of survival without event. My chances have gone from 85% to 95% in just a couple of days!

Daddy and Mommy called some people to let them know the good news, and Papa stopped in for a visit in the morning. Brian, my new music therapist, visited for a short amount of time. I really love music, and he was terrific! He took requests from me, Mommy, and Daddy, and played his guitar and sang with us. Though I was kind of shy, I told Mommy how much I liked him after he left. I can't wait until he comes back!

A couple of Mommy's friends from work (Meg and Julie) came in right after lunch, and they brought me Care Bears balloons and yummy Penn Station fries, as well as a very generous gift for Mommy and Daddy from her Board Office friends (what nice people!). Those French fries were the best thing I have eaten since being in this place (I secretly think that's why I had such a good nap). More of Mommy's friends from Loveland (Kyle and Mary Ellen) came by when I woke up, and they brought me even more presents. With all of these fun gifts, I'm starting to wonder when the birthday cake is going to come...

'Nise came to visit again, and she brought more good things. I especially liked the BIG card with Tinkerbell, Dora, and the angel that watches over me as I sleep, as well as the card from Chewy (her dog).

The next part is a little graphic, so if you have a weak tummy, you might not want to read any further...

They had to change the dressing on my PICC line tonight, and anyone who has seen me since I've been in the hospital knows that I don't like my PICC line messed with. Daddy had to hold down my legs, Mommy was rubbing my head, and two nurses unwrapped, peeled off an extraordinary amount of tape, and cleaned my PICC site. Though it only took me one sentence to tell what went on, it really lasted FOREVER, and it was by far the worst experience I have had yet in the hospital. While crying a river of tears, I even developed some new words for the pain I was experiencing. Instead of "oww" or "ouchy," like I would usually say, I said, "goo goo" and "gaga." Mommy's eyes were full of water by the end, and 'Nise actually had to walk away.

One light in the whole dark experience was that I got to wear the new Tinkerbell jammies that 'Nise altered for me so that they have snaps down the right side and they fit over my PICC line. She sure is taking care of me (and my parents)! I even let 'Nise rock me before bed, and I went down without a fight...

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