December 19, 2005

We feel as though we see a light at the end of the tunnel in terms of when we may get to come home. Of course, each time I say this things seem to change quickly, and we end up staying longer than planned.

Leah had a good day today. We got up early for us here and she got ready for preschool since she is able to go there each day for an hour in the morning. It is not like Sonshine-she is the only student, and there are not any cute songs or art projects, so that makes me sad, but she thought it was OK. I still felt like Leah was not quite herself after all the different sedatives they gave her yesterday. Morphine is supposed to be out of your system quickly, but the other medication is not. So, part of her fatigue I attribute to that. Leah also has low counts right now, so that, too may make her more listless. She did have a morning nap, but no matter how tired she is, she always wants to attend the activities and go to the library. We did manage to make it to the library with Beth Ann and her daughter this afternoon and also attended the afternoon activity-baking a cake. The highlight of our day was the evening activity-the Christmas party with a visit from Santa. Leah even had her picture taken with him and received two presents. We decorated cookies and did an art project as well. Tyler, one of the Dance Marathon college volunteers, visited Leah after this and painted a picture with her. The two finished their painting project by painting their faces. Dr. DePaola will think she has a bad case of stripes tomorrow.

I am happy to report that the doctors have decided to indefinitely postpone/cancel the CT scan. I don't want them to overlook something they feel is critical to her health, yet Leah has been feverless (knock on wood) for almost 40 hours now. We were originally scheduled for a CT scan with general anesthesia, but lucked out when the 3rd floor had some type of flooding problem and the water had to be shut off. Apparently this rerouted some different procedures and made it impossible for us to have a CT scan today. Dr. DePaola has indicated he would like to send us home. We would like to be home. However, we also do not want to be back here right away, either. Thursday is our clinic visit day when she receives her Vincristine and has blood counts drawn. I have already told them that if they release us on Wed., I would rather just stay until Thursday since her port is already accessed and we would be driving back right away the next morning. They have told us they can do her chemotherapy on Wed. if we get to go home that day.

Leah did have one traumatic time in her day. They must reaccess her port every seven days to help prevent infection. That entails taking the one needle out and then putting Emla cream on it to numb the site for an hour and then reaccessing. When we arrived last week this was not a good experience since it took them four different tries to achieve success. Of course Leah remembered this and even though she is little is listening in on every conversation. She worried and mentioned having her port re-done several times today. Overall, though, she did a good job with the procedures and the Child Life gal, Emily, was very helpful in distracting her. She brought Leah two nice books for her hard work. And, the nurses and Emily made sure that her favorite evening nurse assistant, Jeremy, could come up from a different floor where he was working to help her as well. I felt very happy that they only had to attempt to access her port once and it worked.

I am planning on working on Wednesday. That is Chris' day off, so he will be driving here tomorrow with Chloe. I will stay until it is almost Chloe's bedtime and then driving home with her. It will be strange for me to be away from Leah, but I have been preparing her for this for several days. It will be good for me to get a break, and also for Chris to be able to spend time here, too. He knows the staff here, as well, and Leah trusts many of the nurses she is getting to know. I really cannot imagine being back at work and pretending life is normal. Things have been so abnormal since the day she was diagnosed, that it almost feels as though time has stopped. I am excited to see the kids at school again, but it finally dawned on me today that I would need to do lesson plans!

We are trying to think positive thoughts to keep her fever away, and pray for her chemotherapy to work as well. Every message, letter, email and phone call we receive is greatly appreciated.