Day 41 A Belated Happy 4th of July

Hi everyone,



Gosh, I really lost track of the time. Didn't realize it's been so long. Well, things have been hopping. We've had several extra trips to HUP and will now be going twice a week, as Bob is in the throes of the skin reaction component of GVHD. He has developed quite a rash, especially on his back and chest. If you just look at his face, he's so pink you'd call him the picture of health..........although that's not all rash, as his hemoglobin(hgb) is now up to 13.0..........I don't think mine is even 13.0. At any rate he started on steroids on Monday-----100 mg of prednisone twice a day--yes that is not a typo. I know all you medical types out there will know this is a huge dose. Needless to say, Bob has a whopping appetite and his knees are feeling better. Unfortunately he is already having trouble sleeping despite taking a sleeping pill. And today he started a second drug, also an immunosuppresant, called enbrel(used also for rheumatoid arthritis). We have to go to HUP for this twice a week since it is being given as part of a clinical trial. There were four different drugs that Bob could've been placed on....they are chosen randomly by a computer......2 were IV, one was oral and enbrel is given by subcu. injection(here comes the sore belly again). They all had their advantages and disadvantages. I think we got the better deal w/ this though. The idea is at any rate to nip this GVHD in the bud. The skin reaction can get much worse w/ blistering and 3rd degree burns, and it can also affect the intestine and liver(we won't go there), so we're praying that these drugs do the trick. In the meantime we are stepping up the neutropenic precautions as Bobs counts are probably going to fall from both these drugs, and he may need blood and platelet transfusions......bumps in the road, that's all these are.



Luckily we were able to get out yesterday and had a very enjoyable 4th w/ our "games" crew over at our friends' Lee and Yvonne A. Bob had a great time......it was his first time out, other than HUP and riding in the car.....and he managed to stay out for 4 hrs. I'm sure that was thanks to the "roids", but we'll take it. Oh, and he cleaned up at Texas Hold 'Em, which he called beginners luck, since it's been so long since he played. So thank you Y and L, you are always great hosts.



We also had a minor scare last week when Bob had a CMV level come back positive......that's a blood test to check for cytomegalovirus, which can crop up in pts. who are immunosuppressed. So we trekked down again for another level and an IV dose of acyclovir(anti-viral med). But thank God the second level was negative, so we narrowly escaped 12 days of IV acyclovir at home, but at least I would have been able to administer that.



So Bob's been watching a lot of baseball still, but now tennis is thrown into the mix(oooh I'm so mad Serena lost to that weasel Henin, but at least Venus rolls on). He's also still reading and has contemplated getting back to his computer games......which is a great barometer for me that he feels stronger, b/c I know Bob is really tired when he can't manage a World of Warcraft session. And if I see him at the computer, you can be sure I will be nagging him about a post. So thank you everyone for your continued support, blogs, prayers and cards, even when I am so delinquent. And thank you too for asking about my parents, who are doing pretty well right now. My brother Tom and niece Kate were up this past weekend for a Noon/e family reunion. Noon is my maiden name, but some of my Fathers' family spell it w/ an e on the end. In fact there was another Maureen Noone in my high school class and we were known as w/ and w/o the e. But I digress(which is why it takes me so GD long to write these things). So the reunion was a huge success, and I am so jealous that I missed it. Family members from far and wide that I haven't seen in years, so Congrats to my cousins who organized the whole thing, Margi, Sharon and Susanne. You did a great job and Bob and I will be at the next one.



Well, I must go. Mucho thanks again. We do appreciate all your concern. And enjoy this hot, hot weekend coming up.



All our love,

Bob and Mo