December 1, 2005 Part 2

Today has been a long and tiring day. We began the day with hopes that we would be home in Denver by supper, but it quickly became obvious we would be going nowhere anytime soon.

Right after Leah awoke, she started developing a fever. The new rule for her with fevers is that if she begins to run one, we must return to Iowa City. I guess it is fortunate for us we were still here and that we did not have to come back after just returning home. However, Leah was really wanting to go home and she misses her sister, Chloe. After a child with a port has a fever they must not only come back to Iowa City, they must remain here for 3 days. Blood work is drawn, and the results do not come back for 72 hours. During that time antibiotics are administered as they try to wipe out a wide range of possible infections. Because Leah underwent surgery yesterday, the surgery team is the team who was in charge of her care. When she started running a fever, the surgery team transferred care to the Hem/Onc team (hematology/oncology). Once they transferred care we knew we would be here for a few more days.

It is just now this evening that Leah seems to have a little life to her. She is tired, and also quite sad and scared. I am sure not feeling well exacerbates her feelings of fear. The social work team will be working with her to become involved in activities when she must be here, and they will also be visiting with her about her port and different things she will be undergoing. As I mentioned before, Leah does not really want to talk about things yet.

My sister, Suzanne, spent another day here with us. And, a friend of ours, Heather, came down for the afternoon. It is a nice way to break up the day, yet Leah was not good company today, and even though the grandparents have asked about coming down several times, we will wait to see if she feels a bit more like her old self tomorrow first. We also had an unexpected visitor. Melissa, a girl in Leah's class happened to be here. Unbeknownst to us, Melissa suffered from a neuroblastoma a few years ago. She is a beautiful little girl and a survivor of cancer, which gives us something to hope for. It was good to visit with her parents and have some of our fears and questions answered.

We are quickly being educated about cancer, chemotherapy, and many other aspects of hospital life we never really wanted to know about. We do chuckle several times each day about the unique people we meet here. The staff is wonderful and Chris and I (with nothing better to do) have special names for each of them: Mary In the Middle is the chemotherapy expert who will develop Leah's protocol, Sticker Man is Dr. Oleg who tries to ply Leah to cooperate by offering stickers, the Port Lady, is Lisa who educates parents and children about the use of ports.

Leah has also been picked up as a primary patient by her nurse, Kristi. Right now Kristi has no little nickname (she tells us this hurts her feelings a bit). The nurses here can sign up with a child as their primary nurse if they feel they made a connection with the child and her family. We feel very happy that Kristi has decided to be Leah's nurse, even though Leah has yet to smile for her. When the Basket of Hope people visited last night to drop off Leah's basket of goodies Kristi stayed with us to pray; we know Kristi is a special nurse and comfort for Leah.

The other person I ran into today during my 30 minutes away from Leah was Doug Bowman. Many of you who read this blog know Doug suffered a stroke in September. He is part of a stroke study here at the Hospital. He had already heard about Leah and told us he was praying for her. This made me smile because Leah asks to pray for Doug each night, too.

We hope for better news tomorrow and also hope you remember us in your prayers tonight.
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