December 15, 2005

Another day in Iowa City. We had hopes that we would be at home, or definitely on our way to being discharged, but during the night Leah spiked a fever above 101. Because of that we are here for at least three more days. And, just an hour ago, her fever again reached 101. I am wondering when they will decide we can go home. While I would like to be home, I am glad we are here to receive the medical care Leah needs.

Immediately upon our arrival on Monday night Leah was started on an antibiotic. This is precautionary and always done for patients with fevers. The antibiotic is a general one that will eliminate many different types of infections. Since she spiked a fever last night they started a second antibiotic today. This one they referred to as a "big gun" to try and get rid of any type of bacterial infection if one exists. Several times during the day I noticed Leah's forehead was rather red. When I tried to get a better look she would push my hands away. She is quite sensitive about anyone touching her now. At first I thought it was because she had rubbed her head on my scratchy sweater, or at one point she had bumped her head on the elevator wall. As she was falling asleep I finally got a closer look and noticed that not only is her forehead red, but throughout her scalp she is quite red. The nurse noticed it, too, and told me this is one reaction to the new antibiotic. It does not mean she is allergic, but it does mean that instead of administering it over 90 minutes, they will slow the medicine down and administer it over 2 hours time. If this still does not eliminate the redness, they will give her Benadryl to counteract the reaction.

We were very excited to have Kristi as our nurse last night. However, when Kristi came to check her blood pressure, pulse and temperature at midnight, she also needed to draw blood because she had a fever. Leah awoke to Kristi standing over her with a syringe and wearing a mask. She was a bit hard to calm down after that. And, to add to the trauma, her port was not cooperating and Kristi was not able to get blood to flush back in it. This meant that after trying several different times, a medicine that would be injected into her port was ordered from the pharmacy. Apparently there can be clots that exist at the site of the port, and this medicine would get rid of it. While we waited for the medicine to arrive (Leah went back to sleep, but I was too keyed up at that point) I did manage to read much of a book. Once the medicine was ready Kristi decided to try it one more time without administering the new medicine, and it magically worked. By this point neither of us were going to get a good night's sleep, and today we were both rather tired.

This morning Leah attended activity time which was an art project. And this afternoon, The Child Life team took Leah shopping at their Christmas store so she could pick out Christmas presents for her family. She enjoyed this a lot and also liked wrapping them. She was excited that she had a secret about what was in each gift, but as soon as we returned to our room, she had me open mine. This afternoon they had karaoke, which we skipped (even though I really wanted to go), and we also missed Bingo tonight. The biggest problem with going places today has been that her IV pole continues to beep at us every time we get somewhere far away. Her battery pack did not have much juice, so after this happened a few times and we had to return quickly to our room (picture me carrying Leah and attempting to push this huge IV pole on wheels around the hospital as it is beeping incessantly) to get someone to shut it off. Needless to say, we had a 5 minute visit to the library this morning and only managed to pick out videos. We returned this afternoon and made up for our inability to check out books from the morning. We had to have an assistant help us down with our books which took up much of a little shopping cart that is now parked outside our room.

Leah is also making friends. One of the Dance Marathon volunteers, Liz, talked with Leah at the pizza party last night, and told her she would come and color with her today. Leah was very happy to have Liz show up this afternoon and they spent an hour coloring together.

And, the big news of the day is that Leah's AFP counts were taken. AFP (alphafetoprotein) is a number that is very important to us. When she was first diagnosed on Thanksgiving the doctors took one more blood sample before they sent us home and tested the AFP level. That was the first and biggest indicator that Leah's tumor is a hepatoblastoma. A normal AFP range is from 0-8.9. On Thanksgiving Leah's AFP was in the 652,000 range. After chemotherapy last week, her number is now in the 370,000 range. The doctors are fairly happy with this. It certainly was the first thing mentioned to us by everyone associated with her case. This is a good indicator that the chemotherapy is working. Her abdomen is still large. I keep looking at it hoping that it appears smaller. I have heard from different nurses here and others who have experience in dealing with cancer, that tumors do not shrink overnight. It may take a month or two for it to shrink noticeably. What is also difficult is that now Leah complains about her stomach hurting. It is hard for us to determine how much of this is actual pain and how much is mental/psychological from all the poking and prodding that is going on. I do not doubt there is pressure, but it is interesting to see her walk normally when we do something like go to the library, and then grimace in pain as we walk down the hallway here. She truly does move more slowly, so I am especially anxious for the tumor to shrink because I would like to see a difference in her mobility and activity level.

Before I end, I must mention the resident Nancy. She has been putting in a great deal of effort to get Leah to like her-or at least not scream at her. I enjoy giving her a hard time about this, and Kristi especially had to rub it in today. The first thing out of her mouth when Nancy came on duty was the fact that Leah read Kristi a story and gave her a hug goodnight. Nancy is growing on Leah, but she is a long way from a hug yet, I think.

Chris was here for a bit this afternoon. He brought us clean clothes, food, and more books and magazines. Leah was very happy to see him and have him run errands for her for a while. He left around 8 so he could sleep at home tonight, get Chloe ready for daycare tomorrow and go to work himself. Since we don't know when we are going home, we may have someone bring Chloe down for a visit this weekend.