December 21, 2005

Today was my first day back at school since I left for Christmas break. I must admit I found the whole day rather overwhelming. It was wonderful to have so many people express their concern and lend support, and great to hear the kids welcome me back. It was also good for me to have something else to focus my mind on for a while, even though Leah was never far from my thoughts.

Chris was with her all day in Iowa City, and they apparently got along just fine. I must have called them ten times at least, so the idea of me really being able to get away from things for a bit, was impossible. Chris assures me he has everything under control, which I am sure he does, but the control freak in me finds it impossible to let things go.

Leah's CT scan was scheduled for 3 PM. That means she was unable to eat or drink at all today. When I called this morning they were on their way to story time in the library. We were also very fortunate to have Tom as Leah's nurse today. I think there is something to be said for the connections that are established with the people who have been with us in this ordeal since the beginning. Tom was the nurse Leah had the day she had her MRI done and is only on the 7th floor one day each week, but we have had an instant bond with him, and are happy to see him each week when he is on our floor.

Originally this morning Chris told me they were planning on starting the anti-fungal medication. After hanging up and thinking about this I had many questions as to why they decided this. Since they were planning on doing a CT in the afternoon to determine this, why not just wait to start the medication? Antifungal medications are pretty hard-hitting, so to start one without knowing if there was an infection seemed rather strange to me. Since I am miles away and have not talked with the doctors, it is hard to know if they discussed this with Chris or what their rationale was. A number of different phone calls followed with me asking many questions and Chris trying to give me answers.

The CT scan was scheduled for 3:00, and luckily for us the mother we met yesterday offered us a wonderful solution to Leah's problem with the barium drink. The resident, Nancy, looked into things when Chris suggested this last night and Leah was sedated with something through her port and then intubated to receive the barium. I called Chris at 3:30 to be told that she was in her CT scan. His question to me was "Did you know Night Ranger sang Sister Christian?" While Leah was busy having her scan he was busy playing music trivia with the nurses! I had to give him a hard time about leaving our child alone for this procedure, but James had gone with her and she was under anesthesia, so I suppose I can give him a break this time.

The results of the scan show nothing alarmingly wrong with her-aside from her obvious problem. She does have pockets of her lungs that are not inflating all the way, due to the fact that she has been in bed and not running around and exercising her lungs for too long. Apparently they feel this has been causing her fever. The anti-fungal medication was never started, either. Once they took her blood this afternoon and her counts started rising they felt there was no danger of a fungal infection, because to have that her counts would not have come back up. There is some technical/medical definition for this and Chris said that when Dr. DiPaola was explaining it all Leah was coming out of sedation and crying so he could not hear it. Later he wrote down what the resident Anuhba called her condition, but if you have seen Chris' handwriting, it may as well be Greek.

While I don't think Chris' day was fun for him, it does not sound as bad as my day on Sunday when she was sedated four times without it working. They appear to be getting along well, and when I have called Leah does not want to talk to me on the phone and says she does not even miss me. I am actually glad for that. It would be much worse to hear her crying in the background.

Chris gave Leah her shot tonight. She is toughening up; she did not even cry. I talked to a co-worker of mine today who is a cancer survivor. She, too, had to receive the GCSF shot and told me it was one of the most painful things of her treatment. I did not doubt Leah when she said it hurt because she rarely complains of pain, but having an adult say that makes me realize how very much they must hurt her.

I have enjoyed being with Chloe and am realizing how much more verbal she is becoming. I would attribute this largely to her sister's absence. She no longer has someone deciding what she says before she even opens her mouth. It is fun to hear her talking and seeing the wheels turn in her mind. She definitely has her own ideas.

Early tomorrow morning my mom and brother, A.Jay, are heading down to Iowa City. Chris is then heading back with A. Jay so he can go to work. My mom will spend the day with Leah, and then in the afternoon I will head down with A.Jay and Chloe. Apparently my brother does not mind riding in the car and is looking forward to some stimulating conversation. My friend Peg is giving me tickets to the Hawk game tomorrow night, which I will go to with AJay. After that is done he and my mom and Chloe will head back and I will be in Iowa City again for a bit. I would like to tell you that they have said when we can come home. However, the same rules apply: Leah needs to be without a fever for 72 hours. If that means exercising her lungs, we may have her doing wind sprints up and down the hall very soon.

Today we are happy we have some answers about her fever, even though the solution will not occur immediately. We are also thankful that her CT scan was not as traumatic as her previous experiences. We also pray that her counts will continue to rise, and that her AFP, which they check tomorrow, will again show a dramatic decline.