February 1, 2006

We have spent an uneventful day in Iowa City. Last night we did not get to bed very early at all. The teenage boy across the hallway who has a head injury spent a long time screaming obscenities at his parents and nurses, and his parents responded by yelling obscenities back at him. It was quite educational and luckily Leah fell asleep while this was going on.

Leah was awakened at 4 AM for more labs to be drawn. Unfortunately she spent the entire time this was going on screaming and crying. Her nurse could not get any blood return again and she had to call the resident, Dina, abou this. Dina thought they should put an IV in to draw blood but both her nurse and I quickly vetoed this. This is one of my pet peeves about the residents. They do need to learn somewhere, but I would prefer it not be on my child. We really bonded with the December residents, but the January ones we have not bonded with, and it seems at times that the first year residents have had classwork, but not opportunity to apply what they have learned in class. They also do not know each child and seem anxious to use the things they have learned and do not often consider the fact that they need to try and minimize the trauma for the child as well as try to be the least invasive as they can. When Erin, the nurse, came to try to draw blood an hour later and Leah was sleeping it drew fine. This makes me wonder if when Leah screams and cries she is closing off a vein or something that makes drawing blood difficult.

Leah's electrolytes seem to be more in line with what they need to be. They have taken her off her IV pole and fluids and removed the electrodes. She received her supplements orally tonight-all 8 different medications. She did not complain about this very much-I think we heard the word "icky" only once. They will draw labs again tomorrow morning and if things look good, we may go home. I hate to plan on anything because it all seems to change minute to minute.

The AFP reading is up again-over 300,000. I did not even want to know the numbers because it is hard to hear when things appear to not be working. Tom, our nurse, pointed out that at least her tumor has a marker. Many other patients have to just try multiple rounds of chemo. without any indication that things are working. With this tumor, we have known quickly when things are not working and the doctors can change course for the next round. We are still waiting for Leah's counts to bottom out and then recover so we can start her next round of chemotherapy.

Dance Marathon is approaching on Friday. I definitely hope we are out of here so that we can attend. We have heard so many positive things about this experience - I can hardly wait for Leah to get to feel so special. Chloe will also enjoy herself even though she may be hard to corral and entertain. Tonight she is with Grandma Karen since Chris is on call. Leah got a kick out of my conversation with Chris earlier when I told her all the crazy things Chloe was doing at home. She loves all the silly stuff Chloe does and just rolls her eyes.

My mom is still here, so after lunch today I went to Wal-Mart and the mall. Leah raked in a few nice treats-her first pair of flip flops, a new outfit from The Children's Place, and a hat that says I Love Mommy (that she does not want to wear! :( She also got a cool Dora book that has a little record player and records that come with it-it plays 24 songs.

Leah attended both afternoon and evening activies today-it has been nice to not drag the pole around with us. Tomorrow is Groundhog's Day so we made Groundhog's Day cards tonight. She is very tired tonight since she had no nap and was up until 11:30 last night. We did visit the library again, and James stopped to see her even though he was on third floor today. Mrs. Larson's (Leah's preschool teacher) daughter Katie stopped by to meet us today since we will get to see her at Dance Marathon. Katie has been raising money for Dance Marathon and has done a great job!

We pray that Leah's electrolytes can return and stay within normal limits, that the doctors find a new treatment that will work for her, and that her tumor is not growing back despite rising counts.