April 9, 2006

Wow! What an awesome benefit! What a wonderful, amazing turnout! Thank you to everyone who volunteered and spent many Wednesday nights-and probably a lot of other time, too- getting things organized. And, thank you to everyone who came to show us their support. We were warned that we might be overwhelmed by the turnout, and we were. It was wonderful to visit with so many people and know that so many people continue to read our blog and pray each day for Leah's recovery. We will definitely continue to need prayers as we desperately need her AFP to drop dramatically into the normal range to know that her cancer is in remission.

Had I known how many people would be at her benefit I should have found a way to stay for its entirety. As it was I headed back to Iowa City to relieve Roshaun and her husband, Tim. They appeared to have survived the evening and got in a little glue-picking for fun. Leah was quite happy to see me and we ended up staying up quite late. Today we have had a lazy Sunday. It has been OK to not have much excitement here, but Leah has proclaimed it boring. Since she feels good it is hard to sit around hooked up to an IV pole not doing normal 4 year old things. She definitely was irritated to find out that Chloe went shopping with Grandma Kathy and Pat -she needs to go shopping, too. Finally we headed to the library and sat on the roof chairs on Floor 8 to be outside. We were able to watch the hospital helicopter fly in which was rather exciting. Usually we just hear it from outside our window. Our floor is quite empty this weekend, so Stephanie, Leah's nurse, had a little time to make a potholder with her and hang out. Leah did enjoy that. Earlier she had bemoaned the fact that "no one even played with me today!"

Hopefully tomorrow will be a bit more entertaining for her-there will be the normal daily activities to occupy us so that helps. Plus, I plan on taking her outside again even if she is hooked up to her IV pole.

While this is repetitive, I will remind you again to pray, pray, pray for this new chemo drug to do its job and really knock her AFP down dramatically and quickly. While the doctors do not think we have run out of options yet, the more drugs we go through, the fewer we have left to choose from. The best indicator of long term prognosis is the AFP's response. Leah's AFP does respond, but seems to become resistent at some point to different drugs. Of course, this has been something I have been praying about constantly already. I think Chris and I were very focused on the resection surgery and viewed this chemo as more of a follow-up, but it is not and is still very, very important for Leah's recovery. So, please continue as you have been doing and pray for Leah's treatment to work and for wisdom for the doctors as well.

And, again, a huge thank you to everyone who shared in Leah's benefit with us. We will never be able to repay everyone for the kindness that has been shown to us.