April 8, 2006

This evening is Leah's benefit here in Denver. I am in Denver now and will be until sometime this evening when I head back to Iowa City. I came home last night with Chloe and left my mom with Leah. Leah originally thought this sounded fine, but did shed a few tears when I had to leave. This breaks my heart every time it happens, but she seems to recover quickly. Today my mom will be with her until this afternoon when her babysitter, Karen, takes over until 8:00 when Roshaun (Leah's nurse who will not be working but babysitting instead) and her husband Tim come to be with Leah. These people are helping us out tremendously so that I am able to be at her benefit.

We got word yesterday that we will be in Iowa City until next Thursday. They will be starting chemotherapy on Monday (right after her antibiotics for her port infection end). While we are not excited about staying longer, it is good that they are being aggressive about her treatment as well. She will be getting two drugs- Doxorubicin and Carboplatin- that are used in Europe to treat hepatoblastoma. This time it will be administered over a 72 hour time span. While the surgeons feel they got every visible portion of cancer they agree that there could be (and probably are) microscopic bits of cancer remaining. That is why chemotherapy is used. One indicator of that continues to be the AFP level. Leah's is still very high-nowhere close to 0-9. While we have heard it take a while for it to normallize, hers has a long way to go, so we ask that you pray fervently for the AFP to decrease dramatically and be responsive to this chemotherapy.

The other thing I did not mention when I last blogged is that on Wednesday Leah got a haircut. She had been sporting a dread lock and matted blob of hair on the back of her head for months. While it looked bad, she did not look bald. However, after surgery she complained of it pulling on her scalp so we took her to the hospital hair salon and had them remove that portion. It does look neater and there were scabs underneath that hair where it had pulled and bled, so it is good we had it cut. She still has bangs and a fringe around the back, but she does look bald. That breaks my heart, too. I know hair is no big deal and it can grow back, but it is so unnatural to see a child without hair. You know instantly that person is sick. We have suggested hats, bandannas and any other cute thing that would cover her head, but she is not interested and I do not want to make an issue of it either. Why should she think she has to wear a hat to be cute? One of my friends told me her daughter was the same way when she lost her hair and was uninterested in covering up her bald scalp and she was proud of her for not caring about people staring or what others thought. I must admit that I have felt this same pride as Leah walks around bravely while going through this.

Chloe and I plan on getting outside a bit today and enjoying the weather. Chris is working until the afternoon sometime. We hope we see many people at the benefit tonight and can't wait to visit with everyone. Keep praying "lower AFP, lower AFP...."