Dr. Bobs Adventure

We've created this blog for several reasons. First is to keep family and friends(including Bobs' pts.)informed of Bobs' condition while he undergoes treatment for Acute Myelogenous Leukemia(AML) at HUP. You may also write to Bob by posting a comment, which I'll print for him to read. Please feel free to pass this blog site on to anyone you think may want to join us.Instructions to blog are listed under day 12, and bobs' address etc are under day 14. Click on April Archives to find both.

Thursday, July 05, 2007

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


Anonymous Anonymous said...

thank you, thank you for the update.. sounds like alot of mixture of things going on there.. hope the rash subsides.. now you and bonds might have something in common( if, indeed he ever did take 'roids) and i know that acyclovir scare..when mark had the cellulitis this year, there was something or some test theywere waiting on that would keep him longer in the hospital on heavy antibiotics also.. thank goodness he didn't have it either..
It's 103 as i write this..my work out was unloading everything i bought at Sam's club. and walking the dogs. its almost too hot to do anything else..(except swim)...
keep hanging strong.. is the rash really itchy? oh, your hmg is higher than mine also now..
Watch the Allstar game at our ballpark, both my boys will be there this year.. tim bought 2 season tickets a year ago so that they would have the opportunity to go there. so hopefully they will have fun with all the festivities..
take care, and mo.. you do digress a little bit, but it's always enjoyable.. it's fun to hear stories about the other maureen noon,, ha. thanks for the great blog.. and dr. mazzola.. keep up the power!! mdf

July 05, 2007 5:14 PM  
Anonymous Anonymous said...

Sounds like things are going pretty well, all things considered...hopefully that rash will go away soon! Thanks for the update, we've been curious =) Keep cool this week- yick to the weather in the 100s!!!
The Booth Family

July 06, 2007 11:06 PM  
Anonymous Anonymous said...

Dr. Mazzola.. did you watch the homerun derby? both of my boys are there, and will be again tomorrow for the allstar game! Not too much else is going on here, just hoping and praying that you are feeling better! take care.. mdf

July 09, 2007 10:15 PM  
Anonymous Anonymous said...

Hey Dr. Bob and Mo,
Long time i no write, butI've been keeping track of you with phone calls to Mo. You sound like you are doing really well despite the rash. Lets hope the Enbral and Steroids do the trick and that it will be smooth sailing from here.With my 2-3 trips a week to Penn and this nausea I've not done too much socializing but we hope to see you next week if we can get my counts up and yours don't head too far south. We just have to admire each other from afar. (HaHa). Keep going strong. miss Mo takes such good care of you. We love you and will see you next week.
love Deb

July 12, 2007 5:29 PM  
Anonymous Anonymous said...

... Just wondering how your feeling this weekend? I hope the rash is subsiding a bit..read deb's update,, it sounds like the med is doing what it is suppose to do, doesn't it?
when can you eat out again? how is your appetitie? are you slowly building your strength back up? Mo, how are your parents?
well, im off to another game with mark, while tim and patrick go down to san luis obispo for a pre- college registration meeting..
hope your feeling alot better this weekend.. take care, prayers continue..mdf

July 15, 2007 11:52 AM  
Anonymous Anonymous said...

MO, i have to just tell you that yesterday mark had that game , and to get there we drove through napa, st. helena, and calistoga, .. and we drove right by the winery that you and i had lunch at about 20 years ago.. it was mondavi winery,, do you remember.. with the picnic tables out front??
Anyways.. fun memories..hope your feeling better to day Dr. Mazzola.. does going wine tasting sound good to you? prayers continue..mdf

July 16, 2007 12:13 PM  

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