December 28, 2005

Tonight we are back in Iowa City as scheduled. Leah and I left with Grandpa Arlyn around 5:30 this morning. We had enough time to stop at McDonalds for breakfast and put some Emla cream and Tegaderm on her port site. This has been the first time we have had to arrive at the clinic for admittance and some initial labwork, but we know what to expect now. Her appointment was at 8 AM, and the usual round of listening with a stethoscope, weighing her, taking her temperature, and measuring her were done in addition to one last urine sample. Yesterday we had to collect her urine for twenty four hours so this last sample was added to the attractive orange jug we had the privilege of lugging around with us. Leah chose Grandpa to carry her potty around. Lucky guy. We were fortunate enough to have Tom as our nurse in the clinic. Again, he was the nurse we had when we were initially in the clinic (November 29?) and Leah had an MRI. He accessed her port quickly and took some blood samples and then we met with Nita. Normally we will be seeing Mary in the Middle but she is on vacation this week, so Nita met with us and we reviewed some of the different side effects of treatment. (Later on we had a hearing check with the audiologist and her creatine clearance (urine check) results came back-all is good!). They are concerned about her lack of appetite. This is something we have been fighting at home. Leah has never been a big eater, but she picks at things now and after a few bites claims she is full. Tonight we have started her on a medication to increase appetite. This drug is supposed to have few other side effects. So we hope that we see her requesting lots of yummy treats soon.

After the initial meetings in the clinic we were sent upstairs. It feels like we have never left-I am not so sure that is a good thing. Kristi was her nurse today and James was here, too. Leah made sure to bring back the big orange foam Wartburg hand that Lis gave her so she could spank him. Nancy the resident was here as was Anuhba, Dr. Ellen and Dr. Rahdi. When we arrived at the clinic her temperature was 98.6, but within being here an hour or two it had already risen to 101.6. So, we are back to the unexplainable fevers! Perhaps a hospital allergy? She received Tylenol which does bring the temperature down and they decided to start her on an antibiotic only because they must be cautious with her care, but all again agree that this is tumor related. Chemotherapy (cisplatin) started around 5 PM. It is just a drip into her tube attached to her port and currently she is sleeping right through it. This drug can cause a great deal of nausea. Today in the clinic they expressed again how well she did with her first treatment by only throwing up once in the hospital and twice at home. We so hope that is the case again. Her AFP was measured again today. It is now 198,522. It did go down again, but not as signifcantly as the other weeks. The doctors say that the combination of three chemo. drugs make it go down more dramatically than when she receives Vincristine alone, so the week it went down the most was the first and then as the Cisplatin works it's way out of her system the decrease in AFP continues to be smaller. However, it is still declining. And, Dr. Ellen and Dr. Rahdi both commented that her stomach looked smaller. It has been difficult for us to tell at home. Some days when I think it looks smaller Chris thinks it looks enormous, or vice versa. She definitely is not as sensitive about touching it, so perhaps it is not as painful as it once was.

Tonight we will be up every two hours to clear her bladder. The drugs she is receiving are very hard on her system, so it is important that her bladder get cleared out to prevent kidney damage and also because cisplatin can burn the bladder. I am anxious to see what tomorrow holds in terms of how Leah feels. We continue to pray for her fevers to cease and for her to remain responsive to the chemotherapy.