January 9, 2006

Today we spent all day in Iowa City. It was nice to sleep a little later than our Thursday Iowa City days, but we were on the road with Grandma Karen by 6:45 AM. We did our usual North Liberty stop to put on Emla cream and then ate pancakes at McDonalds in Iowa City. Today Leah's port accessed quickly and she had her labs drawn right away. She still hates to have her port accessed, and there are tears involved. It is a small world because our nurse today mentioned Denver, which eventually led her to tell me that her best friend is Theresa Sampson. Suzanne and I used to babysit for the Sampson kids when they were little and lived in Readlyn.

After labs were drawn we were told to waste at least 30 minutes and then return to find out if she needed blood. We decided to go to 7th floor and saw James who was busy(?) working. We also visited Michael and met his mother. He is still planning on going home on the 11th but as his mother says, she won't really believe it until they say goodbye.

When we returned we found out that Leah's hemoglobin was at 7.7. They transfuse below 8, so I am glad we brought her in, although there are many people who go much lower than 7.7 before they receive blood. The rest of Leah's counts continue to look good. We will find out again on Thursday where her counts are, but for right now, we do not have to do a GCSF shot. This was great news for Leah today. I never knew how long it took to prepare blood after they cross and type it, so we waited, and waited, and waited. Eventually we went to the cafeteria and had some lunch. Finally just before noon they started her blood. In the clinic they have infusion rooms. These rooms had four recliners in them and two televisions. When we returned for Leah to get hooked up we met another girl, Stephanie, and her dad. Stephanie was being hydrated to receive chemotherapy and then radiation today. She was diagnosed with Ewing's sarcoma in her sinuses when she was ten, and relapsed this year with a tumor on her spine. This chemo. and radiation is part of her therapy, and she will also undergo a bone marrow transplant--that means 4-6 weeks in isolation. Her dad and I had a good visit. It is amazing how much these contacts with other parents mean to all of us. As her dad said, it is so hard to believe this is happening to you--it is the last thing in the world you ever expected to take place in your life.

Going in for blood and labs means that there is no scheduled appointments with doctors or nurses. However, Dr. Sarvada made sure she saw Leah several times. We were giving her a hard time about going to HuHot and decided if Dr. Rahdi does not bring Leah a Dora sticker on Thursday we are going to tell him that we are taking her to lunch. When he visited later I told him the plan. He asked if he could be invited, and I explained that he could go if he had good news for us on Thursday about us not needing the GCSF shot this round. I think he does not quite know what to say to me, but he does take all the teasing I give him very well.

Dr. Rahdi also visited with me about the AFP numbers that have had me worrying for days now. I believe his exact words were "you don't need to freak out." Normally they do not check the AFP until after four rounds of chemotherapy, but they did check hers to make sure it is responding. Because it is normal to wait until after four rounds, the data is not there to know if AFP declines quickly then tapers, or goes steadily, or what the pattern is. So, for right now, I will have to stop worrying about this. Even though I realize worrying is unproductive, and God is the one in charge, it is hard not to fixate on these things because we are praying so hard for God to work a miracle.

And as for Leah's appetite...it is amazing. She did not really show weight gain today--she weighs all of 26.5 pounds according to them. However, she had pancakes for breakfast at McDonalds, 2 cups of whole milke, M&Ms, part of a chicken strip, french fries, a hunk of cheese, some HuHot, Krismar chips, a piece of bread, 2 cartons of white milk, and a yogurt. I am definitely seeing a dramatic improvement.

Earlier tonight Chloe was busy harassing her sister. She has small plastic utensils in our little play kitchen she was running around chasing Leah with. Leah is yelling at the top of her lungs, "Chloe stop attacking me with a table knife!" Leah has also been busy ordering new DVDs from Amazon. She knows how to work the mouse enough to click on DVDs she wants and place them in our cart. Where do you think she learned this?

I am working tomorrow afternoon and Wednesday. I even managed to get a new book blog emailed in for the Des Moines Register tonight. However, this means that neither girl has thought about bed at all. I thought we did so well last night with Chloe falling asleep on Leah's floor, until Leah woke up screaming and they both were up. Then we were back to the musical beds routine.

We are thankful for each and every prayer being said for Leah-and the fact that so many of you pray every single day. As we have been told many times, this is a marathon, so prayers will be needed for a long, long time. Chloe's prayer each night sounds like this "peese, Lah, tummy, ow, Men." I am sure God understands perfectly.