January 27, 2006

I did not feel like blogging last night. Our Iowa City day was concerning to say the least. We left at 5:30 AM and brought Chloe along like Leah asked. The girls are so cute walking down the halls there with their matching Dora pajamas and sweatpants and wheeling their little Dora backpacks.

Leah's port did not have blood drawback again, so we had to wait for TPA and try again after an hour. Tom, our nurse, still did not have luck, so he took the needle out and reaccessed her port. Leah was so tired that she had quite a fit about everything. I am sure a lot of it was fatigue related. She and Chloe were in bed at 8 on Wednesday night, but still up at 11:30. There was an awful lot of giggling going on up there. Leah had all sorts of ideas about where Chloe should sleep and would laugh and laugh at every suggestion. It is hard to discourage that because we cherish each and every happy moment. When Chris got home he came to see what was going on in the bedroom and all three of us were "hiding" from him under the covers. At that point we knew sleep was not going to happen anytime soon.

Dr. Rahdi had done quite a bit of research for us by yesterday morning. He has talked with the head of hepatoblastoma in Europe who he knows because the man did a presentation for them at Iowa. He had also met with the surgeons and radiologists and his team of doctors. All agree that a rising AFP (which it did again a bit by yesterday) is not good. That indicates tumor activity. However, the surgeons have looked at her tumor very carefully and feel that surgery is questionable at this point. Her tumor is much smaller, but still has a lot of blood vessel involvement that would make things risky. In addition, they would need to go into her lungs to remove her two spots there. While they may be just scar tissue, they could not ignore those at all. We are still "waiting and seeing" because her counts are going to bottom out next week and we cannot do anything until after that time. This waiting part is difficult for me, the control freak. After her counts rise we will have to reassess things again and see where we are. She could do a fourth round of chemo. using a different, harsher drug, doxorubicin. There are no guarantees that this would work, but she has not seen it before so should not be resistant to it. As Dr. Rahdi pointed out a tumor that is out of control will not respond to anything, but her tumor does not appear to be out of control because it has shrunk considerably. There may be another scan involved to see if and how much the tumor has shrunk because any additional shrinkage would make surgery an option, perhaps.

In addition to that news, we called for her blood counts when we returned home and found out that she will need to have two new medicines each day because her chemo. drugs are starting to affect her kidneys. This was explained to us long ago, and is normal. The kidneys should work normally again, but to help them out we get to start medicine tonight. Leah has gotten so good about taking medicine, but telling her there are more medicines involved for her each day, was not a happy bit of news.

Last night Leah was sooo tired. We stopped at the Janesville Library after it was closed so she could check out books. We also saw our friends' new house and Leah ate a little food there and was entertained by their pets.

Speaking of entertaining, having Chloe along is quite entertaining for all involved. She has her own ideas about everything. When we were up on seventh floor visiting James and Kristi she decided to strip out of her clothes. Everyone gets a chuckle out of her. In the elevator she can only reach one button, the bell. The days in Iowa City are long for her, but since Leah wants her along and Chloe wants to be with all of us, I don't see a reason why we shouldn't take her. As long as two adults go along, it seems to work out.

I am hoping Leah acts a little perkier today. Her preschool teacher is coming to have school with her this morning. I am working today, so Grandma Karen will be here.

Say many prayers for Leah. Our news yesterday has thrown us another hurdle to overcome. It is heartbreaking to watch her go through all of these procedures, but there is no choice because we still are working on a cure for her. She is a tough little cookie, but she is looking tough, too. Her eye now droops because of the vincristine, her hair is thin and ratty, and the sparkly, happy, innocent eyes don't look that way anymore. We feel helpless because as parents we want to protect our children, and in this case that ability has been taken away from us. So, we ask that you remember her each and every day in your prayers-for her to be strong as she goes through different medical procedures, for her tumor to continue to shrink, and for her doctors to have wisdom as they proceed with their plans to help her heal.