Update from Keith: September 15th, 2008

Today was Taylor's 33rd day in the hospital on this trip. It was a bad day. She is very sick.

Taylor has been feverish since last Tuesday. It comes and it goes. She's on a number of antibiotics and an anti-fungal but nothing seems to curb her fever.

Her fever consumes platelets voraciously. She has received platelets four times in the last four days. It started on Friday when she threw up blood. There was considerable concern about internal bleeding on Friday because her blood pressure had dropped through the night. Turns out the sores in her mouth and throat were bleeding and it went into her stomach which caused her nausea and led to her throwing up. Lack of platelets caused the bleeding from the same sores that have troubled her since she began radiation.

As the weekend progressed, it became clear that she had something in her lungs. An x-ray and then a CT scan confirmed the presence of pneumonia as well as considerable fluid. At this point her right lung is not functional.

Notwithstanding the lack of platelets, her blood is not clotting properly. Her liver is working abnormally. Her belly is starting to fill with fluid.

Today they had hoped to do a quick surgery that would have them place a tube/wire in her lungs and remove some of the fluid to test it to determine the type of infection. Her poor clotting prevented this.

As the day went on, she grew progressively worse. Virtually every service in the hospital seems to be calling on her: infectious diseases for her infections; oncology (of course) for her cancer, general pediatrics for her regular care, pulmonology for her breathing issues; anesthesia for pain management and the possibility of a surgical procedure; ICU to determine whether she should move there; and I can't remember the others. Tomorrow, ENT will be added to the list as she has an ear infection.

Taylor's breathing grew worse through the afternoon. She spent the time in a breathless sleep--at times breathing faster than one breath per second. As the parade of doctors treating her increased, the concern grew more dire. Her belly grew more distended throughout the day as the fluids in her body increased. Taylor used virtually every minute of her assigned nurse's time today, to the detriment of other patients. That's OK with me. T's my priority.

Late this afternoon the decision was made to transfer her to the Pediatric Intensive Care Unit (PICU). She will have one on one nursing care in the PICU. They are going to try and reduce her fluids to see if it helps. Hematology, Oncology and Pulmonology would all like the PICU to take a sample of her lung fluid either through a chest tube or with a long needle and syringe. Her antibiotics will continue.

After getting down to the PICU she seemed to improve markedly. She was alert and her breathing slowed to a more pedestrian one breath per 2 seconds. Still not great but maybe not bad with only one lung available. The doctors down there saw that and may hold off on the chest tube or the lung puncture. They'll assess as the night passes.

Taylor's white cell counts should rebound soon. That might make a big difference. In the meantime, no one is quite sure what infections she has, why her liver function is abnormally poor or any of a number of things. There are a lot of possible causes, but no definite ones. The doctors are exploring every possibility.

It's too early to tell if this will affect future courses of chemo. There's a possibility that the next cycle will only be a half dose. Her body clearly cannot take much more. Death by chemo is no better an outcome than death by cancer. Both are unacceptable.

I'm hopeful that things will turn around tonight and we'll be out of the PICU tomorrow. That's far better than things looked at 5:00 this evening when a chest tube and intubation for breathing seemed inevitable. It's no fun to watch Taylor when she is so sick. Even getting up to the bathroom is an uncomfortable chore. I don't know how she does it.

I hope to have happier news soon.

(Editor's note - Kristin sent an update last week that I have yet to post...many apologies. It will be up soon.)