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.

Saturday, July 21, 2007

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

10 Comments:

Blogger mary said...

this is a crazy, crazy disease..isn't it , to say the very least.. well, good thing they caught it all and starting the meds right away..were you feeling differently?weaker or anything?
Just alot of baseball going on here ( mark hasn't had a break since jan.. that is when he started his high school ball, and doesnt' want a break yet!) Picking up things for Patrick to take to his dorm.. also had to eliminate some items he had on his list.. fog machine, xmas lights. still debating on the lava lamp and pic of Kramer... He got the hew Harry Potter book and is already involved.. all year. he "spark notes" all his reading assignments.. but this.. he loves...
when you have game night, do you play Bunco ever? I have been to a few of those parties.. they can be fun with the right crowd..
Its good for the updates.. sometimes it seems forever..so thank you for the quick update this week..
Mo,, hope you are getting some rest also.. my prayers continue for you.. mdf

July 21, 2007 10:23 PM  
Anonymous Anonymous said...

Oh my goodness- you two just can't seem to lay low can you!? Glad you were able to get out to some fun events this week, despite all the lab values that have been coming in! And must be nice to have an in-house diabetes doc around =)
We're sending our best thoughts your way!
The Booth Family

July 22, 2007 9:33 PM  
Anonymous Anonymous said...

Hey Reen and Bob,

Just set up my Light the Night website for this years walk. Here's the website link for anyone who is interested in coming out to walk and/or donate...!

http://www.active.com/donate/ltnPhilad/2089_MNooner

Meg

July 30, 2007 7:43 PM  
Anonymous Anonymous said...

Hmmm you can't really view the end of the link.

The last part of the link is 2089_MNooner

Meg

July 30, 2007 7:44 PM  
Anonymous Anonymous said...

Mazzola and Mo, glad to hear you're getting to do some things. Lay low this week - sunny, hot and humid, although this morning's been beautiful, so far. I check in on you frequently. Prayers continue. Love, Mussie

ps Meg-i'll walk or donate. Can i be on your team? I couldn't find a team named mnooner. should i look for another name? i don't know how to get in touch with you so you can email me if it's easier: blambda@gmail.com

mdf-you have to at least let him take the C-mas lights and lava lamp :-)

July 31, 2007 12:25 PM  
Anonymous Anonymous said...

Mussie,

Thanks for writing. You can definitely walk and/or donate. To view my donation page you can either search for me, Megan Noon. Or you can copy and paste the link below:

http://www.active.com/donate/ltnPhilad/2089_MNooner

I just set up the page last night, but hopefully we can exceed last years $1,100 and have some more walkers for Uncle Bob and Debbie. It was a really fun, and heartwarming event. I doubt there was a dry eye while walking. I will be walking on Saturday October 20, 2007 at Gwyneed-Mercy College.

MEG

July 31, 2007 12:42 PM  
Anonymous Anonymous said...

Also the official website is:

http://www.lightthenight.org

search for Megan Noon

or click on previous link in last blog.

July 31, 2007 12:45 PM  
Blogger mary said...

hey megan,, i looked up light the night for out here and its not until oct. in san francisco,, there is one i think in sacramento.. so how much money do i have to raise? can i be on your team out here? i walk everyday, so at least i can try to raise some funds for my buds... oh, and by the way.. how are you doing dr. mazzola? i took the boys up to see dusty baker today at the camp.. kind of fun for them.. mark goes to that camp next week. How is debbie doing? i try to read between the lines from her friends to find out.. mo, how are your parents doing? i keep my prayers going for all of you.. mdf

July 31, 2007 6:47 PM  
Blogger mary said...

oh, and meg.. you can email me at my2sonsfoley@yahoo.com thanks

July 31, 2007 6:47 PM  
Anonymous Anonymous said...

Bob,
Always something new going on....lets pray for a boring type of week. thank goodness mo can give you the meds at home so you can stay put. i check my sugar also, since mom had diabetes and i am at high risk. it isnt too bad to check your sugars..the needles are so tiny nowadays.mo, i got your email and it was great to vent out my sorrows to you..thanks for listening...miss you all and hugs to everyone..esp you bob
love glo

August 01, 2007 12:02 PM  

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