May 19, 2006

We are back in Iowa City. Earlier this week we had several days of lots of activity and feeling good. On Tuesday morning Leah pushed Chloe to the post office and back in her stroller. That was quite a workout considering she has been very sedentary for the past few months. She has enjoyed some stroller rides, baking projects, and visiting Grandma and Grandpa Behnke at the farm.

On Monday when Leah had to have her blood work done we knew her counts were getting lower. At that point we started GCSF shots because her white counts were so low. Her platelets were also at 160,000 (a drop from 336,000 the time before, but still normal). Leah had a good day on Wednesday, but yesterday when I took her for blood work I could tell she felt pretty tired out and miserable. Her counts were lower-platelets were only 29,000 and her white count had dropped a bit more, too. Her hemoglobin had actually gone up to 9.4 (from 9.1 on Monday). Leah had wanted to go to Olive Garden for lunch and shopping for Chris' birthday, but as soon as we had her blood drawn she wanted to go home. So, we drove home with Leah falling asleep halfway there. As soon as we got home we went upstairs and napped for a while and then got up and Leah wanted to nap some more. Obviously this is very abnormal for Leah--in fact, recently she has been getting up before 7:00 in the morning (sometimes even before 6) and going to bed after 10 or 10:30 each night. So, we waited until Chris got home from work and then re-evaluated. Our Make A Wish meeting was set for 6 last night and by the time we knew we needed to go to Iowa City we knew that it was also too late to reschedule that appointment. Leah made a good attempt at sitting up and telling them her wish, "I want to pick up seashells by the ocean -and go to Bisney (Disney)", we filled out some paperwork and then quickly said goodybe to them. Leah had a bath before we left where I discovered that she has the same type of lesion (pseudomonis) as last month when her counts were so low. I immediately called Dr. Loew, the doctor on call, and told him we were coming. Chris came along, too, since Friday was his day off this week. Thank goodness he did. We had quite the interesting journey down since the county roads we usually take had detours. Instead of getting on the interstate by Raymond, we had to drive to Dunkerton, only to have a detour there. We had to take gravel for a while and then were finally able to get on the interstate by Jesup. All the while Leah is miserable and we are wishing we could get to Iowa City a lot faster. Chris dropped us off at the door of the hospital and met us up on 7th floor. Luckily we quickly got our room, were checked over and then accessed. They ordered the same two antibiotics as the last time she had this. Her temperature when we got here was up to 103.4, and her blood pressure was only 90/40. They monitored her very closely for several hours, and after a dose of antibiotic Leah's fever broke and her blood pressure went up a bit. Today she feels a lot better, but she still has the lesion on her bottom that we are watching closely. No one knows if her counts are bottomed out or not and if they have not and are still going lower she will not have anything to fight this infection. Her platelets had dropped more just from yesterday morning until lsat night when we got here- they were 21,000 last night and again this morning when they rechecked them. That is extremely low, but they will not transfuse unless they are below 20,000 because of the platelet shortage.

The room we are in right now is rather interesting. I noticed it instantly when we arrived last night. I call it the rain forest room, but it sounds as though a shower or toilet is running constantly and that there is water cascading down the walls. Leah has fixated on this aspect of our room and finds it quite annoying. I will admit it is hard to ignore. Especially since it is loud enough to keep us awake. I certainly cannot say any of us feels well rested after having blood pressure checks every 15 minutes for a while, then every hour, temperature checks, change of medicines, and a very loud noise added to that.

So, it looks like we are here for a while. Even though we think we know what the problem is, we still need to make sure medicines are working, that her counts come back up, and that she is fever-free for 72 hours. Dr. Vibahkar and Dr. Ellen rounded today and did not have much to tell us beside their looking her over and discussing our need to watch her infection closely to make sure it is getting better and not worse.

While we are not excited to be here, we know many people on the floor right now. Anuba is Leah's resident and both she and Dr. Ellen exclaimed about how glad they were to see us. James is working today, Tom stopped by on his break from a class he is taking today and told us he would be working on Monday, and we have had a few visitors-even though we are in isolation and everyone is supposed to gown up when they enter our room.

I am also sure that we will have an AFP check on our visit. This is something I hesitate to ask about. While we need to know the counts, if they go up we know there is active cancer growing somewhere in Leah's body. Many people have highlighted that these numbers are going down....they are, but we have also seen from her chemo. prior to resection that they can just as easily go up. So, please, please pray for a much lower AFP number (remember, we would like to see a normal AFP sometime SOON). Our prayer requests are many, because in addition to a low AFP, we also need Leah's counts to go up and her health to return so we can have another round of chemo.