Cycle 1, Day +8: Fever and a Return to the Hospital...

Steven has been up and down the last few days. It seems like every other day he's been feeling well, eating and walking one day, the next day I'll be pushing him around in a wheelchair and he won't be eating.

Managing the nausea has been a trick-- we're learning to combine certain medications at different times, staggering them so that he's taking something for nausea every 2 hours or so.

Yesterday, Friday the 17th, Steven woke not feeling well. We took his temperature and he had a low fever (99.5). After we arrived at the hospital for his daily evaluation (blood counts, temperature and weight check), his fever was up to 101.5.

They sent him off to his clinic to evaluate the fever. His blood counts are zero right now, any fever is an automatic hospital admission. It was Friday afternoon, around 2 pm, and no beds were available in the hospital. They told us there was a possibility we would have to go to another nearby Memphis hospital, Le Bonheur. While they were waiting to figure out what to do, they started IV antibiotics in the exam room.

They took blood, urine, nose, and stool samples and cultured them to try and determine the source of infection. The blood cultures grew what they told us is probably either staph or strep. His fever continued to climb, topping out at 104.8 last night.

Shortly before 8 pm they got us a room at St. Jude. After IV antibiotics and some tylenol, his fever was slightly above normal before he went to bed. In the morning it was up again over 103, then back down.

The good news is that after starting the IV meds, he's feeling much better. He ate more today in the hospital than he's eaten in the last 3 days at home, 13 chicken drumsticks, applesauce, orange sherbert, apple juice-- we were amazed.

But his weight is down-- he's lost over 10 lbs since we got to Memphis, and despite his increase in appetite, they are going to start TPN (total parenteral nutrition) tonight. TPN is complete nutrition delivered in his IV. When we leave the hospital, he will continue to receive TPN at home using an IV pump, unless his appetite stays up and he gains weight.

We were told he will be in the hospital until Friday the 23rd at least, possibly longer if his blood counts aren't up by then. His buddy Jake is in the room next door, the little boy participating in the same trial that is 4 days ahead of Steven. Unfortunately Steven can't visit him, since its not a good idea for patients with compromised immune systems to visit each other.

We're praying his good appetite continues, he is able to get rid of the infection in his body, and that his blood c Gounts start to rise soon.

- Kathleen

p.s. If you have any hot tips on what to do about dry hands, please share them with me. I have to wash my hands each time I leave and enter his room, before I touch him, four times during his dressing changes, if I rub my eyes or accidentally touch my face, ad infinitum. It took me some time to realize that I think I'm allergic to the aerosol foam antibacterial soap they've got in the hospital, and for a while my hands were actually bleeding.

They're not bleeding now, but they're dry and cracked and my nails are broken down to nubs. I've tried a variety of lotions and creams, but none of them seem to be able to hold up to 30+ handwashings per day. The HEPA filters remove all moisture from the air and dry lips are an issue too.

Then there's the temperature swings, 35 degrees one day, 65 the next. Guess we're not in California any more...