Day 57 Update

Hi all,



Now don't everybody fall off your chairs.....yes I'm back and not even a week has passed, but this has been a crazy week and I wanted to let you all know in a quick post. I didn't mention last time, but on Monday our NP drew extra tubes of blood b/c Bobs' CMV titer was slightly elevated, but they are using a new method in the lab and weren't sure what it meant. Well, we got a call Tuesday afternoon that the CMV level, which is a viral titer was highly positive and now Bob is on an IV drug at home called gancyclovir. It is the IV form of the anti-viral drug acyclovir that is used for shingles. So Tuesday afternoon was spent on the phone getting all the supplies and home nurse set up(you can't believe how complicated things can be made). On Wed. Bobs' Penn home nurse Kathy came out, on her day off I might add(thank you Kathy), and did the first dose and I have been giving them since, 2x/day. On Thursday we made our trip to HUP for Bobs' 5th dose of enbrel and we were in and out in 45 mins. Praise the Lord! We ran to the market on our way home and were back before 1p. We were both so happy it went so smoothly, and then of course there was a message from our NP Michelle that Bobs' platelets had dropped to 19K!!!! and he was going to need an infusion before the weekend. I think they dropped even further b/c that night Bob had a nosebleed, which has never happened before. So Thursday afternoon we ran to CMMC for a T&C(type & crossmatch) and yesterday Bob got the platelets there. Michelle in her message said "I'm not going to make you come back down here now", meaning back to HUP.......as if she could!!!!!! Actually I suppose they really could and I shouldn't taunt the platelet Gods, since our pal Deb T. is not allowed to get her transfusions locally. And she has needed many since starting on her clinical trial of vidaza and mystery drug X, but I should also tell you that her last bone marrow didn't show any leukemia cells, so that is very good, promising news. Hang in there Deb!



So that was our week. On the lighter side we did get out Tuesday evening to Debs' for a birthday celebration of our other friend Beverly. And Wednesday evening we spent w/ our games crew. Both were great, fun times, but Bob has been very fatigued since than and is laying low today. He is so tired and still has trouble sleeping at night from the prednisone. His sugars have also increased, probably from the viral infection, and he has had to increase the insulin.........but if anybody knows what to do about blood sugars, it is Bob, as many of you,his patients know. Thanks for the blogs.....Glo, it was so great to hear from you. I sent you an e-mail.....hope your address hasn't changed. Thanks also for the continued calls, cards and prayers you send to Bob. It means a lot to us both.



Enjoy this beautiful weekend.....we have the house open and the air off, and I'm loving these breezes. Take care.



All our love,

Bob and Mo