April 25, 2006

Today has gone rather quickly for us. We are in isolation once again. This could make us a bit crazy, but we have had some visitors and that has helped. The lab results have finally indicated what Leah's diaper rash is - psuedomonas- a bacterial infection that affects people with compromised immune systems. So, we are starting on another antibiotic to try and treat this. Leah is not complaining of discomfort quite as much, but we still have a ways to go to be back to normal. Thankfully she has had no fever today. Yesterday she spiked a fever part-way through the day, spent a large portion of time shivering, and required blood since her hemoglobin was at an all-time low, 6.9. Today it is back to 8.7. We are still giving GCSF shots, too. In fact, we were scheduled to give one at 9 tonight but when I uncapped the needle discovered the needle was quite bent. So, we had to send it back to the pharmacy to have them replace it. We are still waiting right now for this to take place.

Overall Leah has had a very good day. We have seen a lot of smiling and heard a lot of giggling. This has occured largely because James, the nursing assistant, came to visit us on his day off. He and Chris made a Wal-Mart run for some snacks for Leah, but the real fun was watching Leah laugh hysterically while listening to James sing "99 Bottles of Beer on the Wall" while being shut in our shower. Leah has this need to pick on James and since she is hooked up to her pole she orders me to carry out her evil plans. I got to hold James hostage with a stethoscope wrapped around his neck, lock him in the shower, and tie him up with a medi-slide. It is a good thing James has a great sense of humor and is a good sport about everything.

Leah is still not very hungry, but they have her on a lot of fluids and she has been sick. Tonight for supper there was Olive Garden that had been catered in for our floor. Leah did show some interest in that-especially the olives. It was also Jenny's (one of the nurses) last day at work and Gloria, who works here, too, bought Leah a Dilly Bar she tried out.

Chris came last night and has spent the day here. His plan is to get up quite early in the morning and head back since he works tomorrow. Chloe is still at Grandma Karen's for a while since we don't know when we can head home.

The doctor rounding this week is Dr. DePaola who we got to know in December. We enjoyed him then and continue to enjoy his care even though we wish we were at home. We are also expecting a visit from Dr. Rahdi to tell us what he plans for Leah's next round of chemotherapy. We received another AFP reading yesterday which let us smile for a short while.....it went from 15,998 on April 10 to 2164 on April 24. This is another significant reduction. The doctors like that the numbers are falling, but while you would think that we should be quite optimistic, they are not willing to offer that much optimism yet. The whole AFP issue is a confusing one and there is not a great deal of data for them to go on. We do know the cells have a half-life of 7-10 days, so each 7-10 days half of the cells are dying. Yet there is not a one-to-one correlation between the number of AFP cells and cancer cells present exactly. Obviously the higher the AFP the further it must fall. Leah's AFP has shown itself to react initially and then become smart and resistant to chemotherapy and all the doctors have mentioned their concern about this. The faster this number can fall, the better, as far as we are concerned considering there seems to be a window of time when each drug works. I continue to ask Dr. Rahdi a million and one AFP questions they do not seem to have an answer to. A lot of things are dependent on how Leah reacts to different drugs and since everyone has a very individual reaction they really do not have an answer. We continue to need a lot of prayers for an AFP that falls exponentially quickly. Normal range is still 0-9. So, we have a ways to go. Of course as I fall asleep at night I try to calculate out that if it falls to 1000 by next week, then 500, 250, 125, 63, 37, 18, 9, it will take 7 more weeks. Considering we have never been able to calculate anything accurately and things never seem to go as we would like we can't plan on this happening. Faster would be better!

Our other activities of the day included massages for all of us, some art and music for Leah, and some visitors-James, Greg (from Dance Marathon) and some time spent with our nurses. Leah's other new favorite activity is looking at new baby pictures on the Allen Hospital website. We were hoping that Drea's picture would be on there, but no luck yet. However, she likes looking at all the other babies and giggling at how cute they look. She has even read some books in bed. And, believe it or not, I even read a book today, too. I have really fallen down on that these past few months.

It is nearing bedtime. We managed to miss naptime today for some reason. We again thank everyone for cards, phone calls, and all the ways we are remembered by many each day. Please, please continue to pray for a falling AFP that quickly returns to normal, for no new surprises on this journey, for Leah to quickly get over her infection and be able to return home soon, and for wisdom for the doctors as they plan out Leah's course of treatment.