December 22, 2005

Greetings once again from Iowa City. I have returned to take care of Leah. This morning my brother, A.Jay, and my mom came down to relieve Chris. They left before the sun was up, since Chris arrived back in Denver with A.Jay a little after 7:30 AM. Chris quickly got ready for work and I accomplished very little as I moved from task to task without finishing anything. I did manage to get Chloe to daycare for an hour while I ran. It is amazing how four miles seemed so far to run today-I have not run in so long that I expected it would not be as easy as it used to be. I repacked a few days clothes for both of us and a few other items and then started the trip to Iowa City with A.Jay and my sister-in-law, Anna, and Chloe.

When we arrived Leah was sleeping, so in her typical fashion had to be fully awake before she could really be any fun to be around. She had walked to the library and back with my mother earlier in the day, and had also spent time blowing bubbles (this is to help her lungs inflate as they should). My aunt and uncle, Carol and Mike, also stopped by, so Leah gave us all the tour and moved right along with her doll, Bitty, in the doll stroller we brought down. We walked for quite a while with Leah giving the directions of where we should go. She is able to navigate her way quite well.

A.Jay and I left for the Iowa game -which is only a 5 minute walk away-and my mom and Anna were left with the girls. Leah had Bingo tonight and even went to the activity without my mom or Anna going with her. This is the first time she has ever wanted to be there by herself. She came back with a few different prizes after it was done.

Carol and Mike had eaten supper in Iowa City and helped us out by bringing back cookie dough that I am using with ice cream to make a Dairy Queen blizzard for Leah. She is pretty smart, so I am not sure I can trick her, but she has requested Dairy Queen a few times, and that is hard to come by. Right now we would do just about anything to have her eat more.

I did not speak with Dr. DiPaola today because I did not arrive until the afternoon. My mom spoke with him and also felt he was quite a nice man. I did speak with Nancy, the resident, on the phone in the morning and then saw her in person when I arrived. Today was the day that they checked Leah's AFP counts. When chemotherapy began her AFP was around the 668,000 range. 10 days after her first treatment her AFP was at 377,000 and today after another week it is at 232,077. It is definitely making some good improvements. The other good news is that her counts continue to climb. This should be the last night that we give the GCSF shot. I will be happy to discontinue that for a bit. Leah cried tonight when I had to give it to her, but does request me. She is also getting pretty smart about how the shot routine works. Once the needle is in, we slowly push the GCSF in while slowly counting to 10. Before I had the needle in her leg Leah was yelling at me to count to 10 - fast!

We have heard the words "home," "Friday," and "Leah," all in the same sentence now, but this also accompanies the words "no fever." I would love to be at home for a bit, but do not want them to send us if we must return immediately because she begins to run fevers right away again. The doctors do try to have patients home for Christmas; there are only 5 patients in our wing that can have 25. It is rather lonely to be here knowing that all the others have been sent home, but her care needs to be the primary focus.

Leah is also starting to lose her hair. It is not coming out in clumps, but it seems as though she is shedding a lot. So far it is not noticeable on her head. Chris talked with the Child Life worker, Emily, about a wig, but after they called the salon in the hospital they were told they did not have any in Leah's size. I will have to do some research on this, since she has requested one and is a chronic hair twirler when she is nervous or scared. Since she is both of those things much of the time right now, it is hard to imagine what she will use as her comfort when her hair is gone.

I do feel somewhat rejuvenated after being away for a bit. The time off from the hospital has been a welcome and much needed break.

This is the season of miracles, and we continue to pray for God to work miracles with Leah.

Jesus said to him, "If you can believe, all things are possible to him who believes." Mark 9:23