Day 71 Update

Dear friends and family,

Well, I have been sitting here for 50 minutes typing my heart out, hit the publish button and was directed back to the sign-in page, and when I got back to the posts all that was there was the title of my update, so forgive this short post.

We've had 2 very busy weeks between trips to HUP and CMMC for check-ups, drugs, labs and platelets. But things should be slowing down a bit now. Bob had his last enbrel shot this week so we're back to weekly check-ups at HUP. Bobs' CMV titer dropped from 1700 to 500, which is good, but he remains on the IV anti-viral med until the level is zero. We hope this is soon, b/c everyone feels that is the main cause of the drop in platelets, which he's needed transfusions of 2x/week. Bobs' blood sugars have been normal the last 3 mornings, prolly from the decrease in prednisone(he's down to 90 mg. daily) and the decrease in the viral infection, so he's dropping the insulin dose every night which is also good. Especially since he's losing weight again(8 pounds in the last 2 weeks), which is thought to be from the high catabolic state caused by the steroids. In the vanished blog I described what he's been eating, but now you'll just have to take my word that he's eating everything that's not nailed down. But the best news we've received came this week. Bob had an engraftment test done which was a blood study, and it showed 93% donor cells and 7% recipient, which means that the donor cells are engrafting properly, and is great, great news. It came at a great time too, b/c Bob and I were both getting a little depressed and discouraged. Bob's still fatigued and the past few days he's been bothered by tremors, due to a drop in his Magnesium level. That's caused by the cyclosporin, and his Mg. supplement is being adjusted accordingly. His hgb is remaining up at 13.0, but his white count has dropped to 2.8, though not unexpectedly from all the drugs he's been on. So we are still being diligent w/ the neutropenic precautions.
Bob is too tired to do much more than read or watch TV. In fact he bought an MP3 player and our buddy Joe T. downloaded a mess of books for him and got him all set up, so now he can just plug in his earphones and he's set......doesn't even have to hold the book. So many thanks to Joe for that. I also have other thank-yous while we're on the subject. Charlie Macy, our friend and Bobs' LMG partner took Bob to Penn twice, which was a huge break for me, and I can't thank him enough. And many thanks to our cousin Candy for the wonderful ricotta cheesecake and sister Santa for the breathtakingly beautiful flowers.....I enjoyed both the whole week. I also want to thank my niece Meg for the fabulous lasagne she made for us last Sunday(baked at our house). My Mother always made a mean lasagne but I told Meg she is now the official lasagne cook, and my Mom can rest on her laurels. I have also been remiss in not thanking George and Aniko for your offers of Anikos' wonderful cooking. Hopefully we will be taking you up on that soon. And to all the faithful bloggers, we do appreciate your keeping in touch. Mussie and MDF, thanks for inquiring about LTN. If anyone is interested my niece Megan is organizing another walk this year for the Leukemia/Lymphoma Society, in honor of Bob and our friend Deb, which will take place in October(way too far ahead for me to wrap my brain around yet, but i would love to do it this year). The website address is under the comments of the last blog.
Finally, MDF, wha's sup w/ your boy Barry? I've been trying to stay up to see him hit the big one, but he's not coming through. I hope it's soon so the "Barry watch" can end...............

Well, this wasn't a short post after all, and I can't believe it's nearly 2pm!!!! Again a big, big thanks for your continued support. And please forgive the long absences. Enjoy the rest of the weekend.

All our love,
Bob and Mo