Wednesday Update

Trish was real tired today and she knew her billi would be high...and it was.

We started the day with breakfast at 6am and back to sleep for a few hours, Trish needed to fast at least 6 hours before 1pm as she was scheduled to have an ulta-sound of her liver to check and see how it was doing with the elevated billi.

We than went to IPOP for blood draw, vitals and weight. Trish's weight is still an issue, but it has been holding steady for the last few visits at 74 pounds. Her weight becomes even more critical because she is at the minimum weight for the magic treatment (extracorporeal photopheresis, ECP). If her weight dips again it may prevent her from getting the treatment that can save her life. Her hematacrit and platlet levels need to be at a minimum of 30 for the treatment as well. Normally hematology will let these go a little lower before they intervene with transfusions. We'll have to monitor that as well going forward.

We got to see the magic machine today. Trish was given a pair of clear ugly goggles to wear after treatment. The goggles will stop her eyes from forming cataracts -- your eyes normal reaction to UV rays (So wear your sunglasses - everyone!). Based upon a study of ECP at MD Anderson, it should take an average of 48 days before we see some significant results, results can occur as early as 11 days and as late as 91 days. Dr. Meade is hoping to see results in 30 days, at least enough to declare Trish stable enough to go home and continue treatment.

She'll start treatments twice a week this Monday a 1pm (just in case there is anyone out there wanting to start a palanca effort).

We are off tomorrow, but Friday starts at 9am with a platlet infusion, labs and a swap of Trish's current Hickman for one with larger lumens to handle the pheresis.

For those of you who have been checking the site hourly today for an update, my apologies. I actually have been writing this update over about four hours as I have done laundry, checked on a prescription for Trish, changed her bed sheets, talked to other household caregivers, written Dr. G and lots of other stuff. Now I need to drive out to a Walgreens to get a special skin oinment the dermatologist we saw today wrote for Trish.

Tomorrow on our day off Trish's Uncle Tom and Aunt Emma will visit with Aunt Mary.