Four nights and three days more of changing diapers every two hours. That’s a lot of diapers and very little sleep. If you think about it, you have to change the diaper and get her back to sleep (could take 20 minutes at times) and then get myself, or Jackie herself, back to sleep. I might be better off not trying to sleep at all. I have enough work to catch up on and the hospital provides a PS2 in the room so Madden awaits.

Anyway, while Rafi is on the cytoxin and the fludarabine they pump her full of liquids to flush her system. The idea is to have the drugs exit the body as fast as they enter. Of course this means she will require some help, usually more often than not, in fully flushing the system. Therefore, she will get lasix often, a loop diuretic that prevents your body from absorbing too much salt and is wonderful in making you urinate (Bournoulli would be ecstatic). To give you an idea of how well lasix works, she will urinate 5 to 7 ounces every two hours while they are pushing fluids. Twenty minutes after a lasix dose (the resident cut the dosage in half to try it out thankfully) Rafi’s diaper held 12 ounces.

However, her Potassium level has dropped so add that to her list of liquids going through one of her five IV pumps. Moreover, she has several new additions to the drug lineup as well. She has one drug to mitigate a particularly harmful potential side effect of the cytoxin and a new antibiotic, flagyl. This drug is to fight an infection that was probably caused by her taking the Bactrim that was prescribed to fight the staph infections that initially delayed our admission. Better living through chemistry at it’s finest.

Up to now she hasn’t been hampered to much by chemotherapy side effects. They are clearly there and there are times that she doesn’t feel well. It is very easy to tell when this happens. Mostly, her eyes change shape and she holds her head in a different manner. It’s hard knowing that this is only the beginning of her feeling badly. We know it’s only for a short time that she will feel terrible but the anticipation makes it worse. She’s been putting her hands in her mouth lately as well so I can only assume that is starting to hurt a little at times.

She does have the ability to crack us up though. Apparently, Rafi loves pizza. This in itself is not very funny, except that she has NEVER had pizza. In the same vein, she also loves coffee. Unfortunately, we can no longer share food with her, so fortunately for her, she got her own piece of plain pizza. She kept asking if I was done, hoping I would say no, so that she could stare at her piece and take more bites. If she only understood she could chew and swallow the food in her mouth and have more, she would surely be a candidate for daily insulin injections.