Thurs Oct 13, 2005
Blood draw for Wednesday was called in to us in the evening. We were told that Dr. Ison, the Infectious Disease guy, wanted to see us tomorrow. So on Thursday we had an appointment made for us at 1:00 pm. Stefan was home by 11:30am and I had my Dr. Appt moved to be earlier than 2:30pm. I got in at 10:30am. (No I was not going to cancel this one again.) Ok, back to his blood test. We saw Dr. Ison and he told us that since numbers in Stefan's blood results were higher, he would qualify for the experimental drug posaconazole for treating invasive fungal infections. The information is also on this link. Thanks to Suzia for finding this out and sending it to me. http://www.clinicaltrials.gov/ct/gui/show/NCT00033982
When he asked to talk to us both, of course I thought it was going to be something else.
So, this is what Stefan's treatment will be like. We have to sign consent forms first. Today, he had a CT Scan, an E.K.G. and blood draws in the office to qualify for the experimental drug. We will find out this information on Monday, Oct. 18. We return on Monday evening to sign papers, then on Tuesday to get first treatment of this new drug.
It will be in liquid suspension form for Stefan to take 2 tablespoons twice daily . Treatment will still be going on for 6 months AFTER he is in remission from the Leukemia. That will drop off the nightly routine we had for the infusions. Meaning we get to sleep now regular hours.
Also on Tuesday Oct 19, Stefan has a bone biopsy appointment with Dr. Frankfurt at 11:00am. Then he is scheduled for a MUGA scan (to see if his heart will do ok for another round of Chemo), then a LFT (Liver Function Test). When results come in we will find out when his Chemo will start and what else is to follow in treatment.
Stefan was in very good spirits today. He kept making jokes referring to using Windex, like in the movie "My Big Fat Greek Wedding." Seen it? If not, go see it. He said I am going to try using it on my forehead, since my skin is so thin and patchy and dry. (ha ha, his joke there.) Maybe they should use it in my picc lines to treat this Leukemia (ha ha again). Also told the EKG girl that sorry, I still have so much hair on my chest, (ha ha) should have had more chemo, maybe my hair would be gone by now. Then all afternoon, he kept saying to use the Windex someplace else... On the way home we stopped to see his mom and brother Bogdan; then we went out to eat for an early dinner.
We get to bed at 8:30 to catch some sleep, just to get up around 10:30, 11:00pm to do you know what, right? Hey.... cuddling up to Stefan's chest just gave me a mouth full of his chest hair. Not very romantic either. Evening is here, our long day is over, night is still ahead of us. More information will follow, as I get details from the doctors. Goodnight.