April 23, 2006

We have good news and some not so good news today.

First the good news: Drea Rose Behnke was born on April 21, 2006 at 10:?? PM in Waterloo. Drea was in ICU initially due to needing some oxygen and running a fever. Leah and Chloe now have their very first cousin. Leah and I got to see her very briefly yesterday when they bent the rules for us a bit and let us into the ICU. Drea has a lot of black hair and when we left Leah said "she is coot."

Our not so good news: We are in Iowa City. Leah started running a fever yesterday. This means that we automatically get to come to the hospital for at least three days. Considering the fact that we were just here for 16 days we are less than enthusiastic to be back. Leah had her counts taken locally on Thursday and several of them were at an alltime low. This seems rather expected since she is on her sixth round of chemo. At that point we started the GCSF shots and felt that we were at the bottom of her counts dropping. Well, we were wrong. When they took her labs last night her white count was so low they could not even calculate it, so we will be doing GCSF for a while I think. Her platelets were also very low last night. The normal range is 150,000-375,0000 and on Thursday hers were 111,000. Last night they were 12,0o0. So, Leah received a platelet transfusion during the night to get her out of the critical range. A platelet transfusion really does not bring those counts up a great deal we have been told, but will bring them up just enough. She also ran a fever of about 102-103 even on Tylenol all last night. They are culturing her blood to see if she has an infection, but it could be from very low counts as well. And, this morning, we discovered that the rash Leah has developed (much like a diaper rash) is more than just that. It is possibly a herpes virus - like the cold sores you get in your mouth-only in a different area. This is also due to chemo. since it is a breaking down of skin. Leah is finding this latest development a little hard to handle. Who wants a bunch of people looking at your butt? And, she is quite uncomfortable, too. Right now they are sending some more specimens away to be examined so they best know how to treat it. At any rate, it looks like we will be here for a while. They have now added the dreaded "Isolation" sign to our room and we will have to gown ourselves if we want to leave our floor and remain in our room while here. UGH!

So, our prayer request list is long. First and foremost we need the AFP to drop. Exponentially. Quickly. 0-9. We also need for Leah's counts to rise, for the infections that have developed to clear up, for her temperature to return to normal, and for Leah's return to health. So, please, please pray. Dr. Rahdi has decided to take a new AFP reading tomorrow. I have come to dread that number-I used to look forward to it. After reading up on hepatoblastoma it seems there are many horror stories of AFP's that never return to normal and treatment that goes on for years with new cancerous lesions being removed, then returning, more chemo, and on and on. That number is our big tumor marker and indicates active cancer in her body, so we will need it to get to normal and stay there. We ask for everyone to pray for this with us.

My sister and her friend, Lis are coming to visit today. We might sneak in a trip to the roof and library. Otherwise it will be fairly uneventful here. Leah will benefit from a nap since we were up until late last night and then awakened many times to have vitals taken.

Leah wants a nap, which means it is time for me to lay down, too. I am tired out myself, so that sounds like a great plan.