Another Clean BMB

Hi everyone,

Well, it's been some time since I've blogged. I did try earlier this week and this am, and both times the blog was down for maintenance...go figure...just my luck. Anyway, just wanted to let you all know that the last bone marrow biopsy that Bob had done also showed remission...so that's the 2nd leukemia-free BMB. Dr. L's office called last Wed. and said could we come down tomorrow, meaning last Thursday. No reason was given, but we had trouble obtaining Bobs' labs last week...never got Mondays results after numerous phone calls which was unusual....so of course our imaginations kicked into overdrive, thinking the blood work showed something negative. Thankfully we were wrong and Dr. Luger just wanted to see Bob since it had been about 2 weeks. What you all don't know is that the next phase of treatment for Bob is a mini stem cell transplant. Dr. L. discussed it briefly with us, but we never wrote about it so we could speak to Bob's family first. His brother Bill and sister Santa have had blood tests drawn to see if they can provide a match for the stem cells, but we won't have the results for about 2 weeks yet. There's a 25% chance of a sibling match. If they don't, than the national bone marrow registry will be used. I don't want to get into all the details of the procedure right now, but it of course carries risks, the greatest of which is rejection. So, in the coming weeks I will be asking for those stepped up prayers again...though as i've written before, I know you are all still remembering Bob in your prayers, even if the current situation is stable.

And, once again, our dearest friend Debbie, in her own words..."will have to blaze the trail", as she will be admitted for her mini- stem cell transplant(heretofore known as sct) on Aug 2. So, please keep Deb in your prayers also, and if anyone wants to follow along on her blog, and send her well-wishes, it is called....debbiesjourney2recovery...and you can find it by going to the "search this blog" box at the top of this page, and typing that in. This hospitalization is going to be another long one...6-8 weeks, and I know she will appreciate any get-well blogs and wishes.

On a lighter note, Bobs' counts are coming back up, and he's doing better w/ the neck pain since he's staying on the meds for that. We've started going out to dinner and to run little errands more often, so life is getting a little more predictable and "normal". My niece Kate has been staying w/ us for a few days each week, and she always brightens things up...not to mention that I put the kid to work when she's here!!! But she's always willing to lend a hand, and her and Bob get along famously. On a sadder note, "my Meggie" is moving back to West Chester this weekend. She is going back to school for education, and will be working as a teachers asst. I hate to think of her not being close...especially when Bob goes back to HUP. I will miss her sorely!

So, that's all the news for now. Actually i could write a lot more, but I don't want to tax MDF too much. Ha! as she would say. So please stay in touch. Bob got lots of belly laughs from that last set of blogs...especially Cozzs' Nonas' wisdom. We thank you for all you love and support, and send our love in return...Bob and Mo

Hello from Bob

a week home, 10 days of antibioticsand iam starting to feel better. the x-rays of my neckshowed severe arthritis and disc disease with several pitched nerves. at least that explains all the pain i have had. my current combination of meds have reduced the pain; and ihve not had to take as many pain killers.many of the treatment options are closed to me, but ihave asked Dr.L if there is any physical therapy i can do. now i have a iv catheter in my left arm which i can cover and tke shower. this is great!!! i had to take bird baths for the last three months. in 10 days i meet with Dr. L; and we will see the next course of therapy. thank you for your prayers and comments. love bob

Home again

Hello friends and family,

Bob is home. We didn't get in until 6p, but better late than later. His PICC line is in and he'll be getting IV abx for 10 more days. Our nurse Nicole told us today not to expect this line to last very long, so I'm guessing Bob will end up with another Hickman at some point. Wbc's and platelet counts are still lower than pre-hosp., but the hgb was up to 10.9! Dr. Luger stopped in today and told us that the BMB from 2 weeks ago was "as good as the last one". We asked about consolidation chemo, but she said we have to discuss other options. We were due to see her tomorrow, but that has been rescheduled. So for now we're doing the wait and see plan. Bob feels okay. He's bothered again with neck discomfort, and had x-rays done at CMMC last Wed. Depending on what they show, and if his counts come back to snuff, he'd like to get PT for his neck. I said I'll join him and get it for my shoulder, since I've never really taken care of that properly.

I'd love to stay and chat, but I've got a bed to make, as I ripped the sheets off this am before I left. Well, just got back from several phone calls, so this is just getting posted at 9:30p. Talk to you all soon. Thank you for all the calls, blogs and prayers. Your support means everything to us. Bob also sends out a big HI and thank you, and he'll try to blog soon.

Our love to you all,
Bob and Mo

Day 4 2nd HUP Stay

Hi everyone,

Sorry not to have posted yesterday, but I got back late and joined the Teklits' for dinner last night. Thank you, thank you for a wonderful dinner, complete w/ a Cosmo of course. Joe, you outdid yourself and Bob(or Bonehead, as he's known in certain circles) was salivating when I described the ribs, chops, and all the trimmings. Aren't I the wicked one to give him the details when he's eating HUP cuisine? But thankfully he will be home tomorrow and we'll have something special. He's doing fine. No more fevers since thursday evening. His wbc's are still low, only 2.8 and yesterday his hgb dropped and he got 2 units of blood, so today that was up to 10.4. Probably fell from the infection and getting rehydrated w/ IV fluids....we'll have to keep a close eye on that since it had been so stable before this admission. He's still on IV antibiotics and will most likely come home on them, so he'll get his PICC line placed tomorrow. They have a "PICC Service" that comes and does it in the room using portable x-ray, so hopefully that will happen early and we can get the heck out of Dodge. He's been started back on the oral abx that he's been on forever, so he's pretty much back to baseline. All the cultures have come back negative, meaning no germs grew from any of them. The docs don't really have a reason for that, but say it happens sometimes, but they still believe the line was infected. Bob thinks maybe because he's been on antibiotics for so long that it kept anything from growing....at any rate he's not having any more signs or symptoms, but he needs to finish the course of IV abx that were started.

So thank you again, one and all, for the blogs, cards, good thoughts and prayers. km, you crack me up as always. I had no visuals until you described them, and anything you want to make is sure to be delish. BTW did Bon share any recipes w/ you? bkh, good for you for blogging, and "Bonehead" sends his love to "Stonehead". Deb, I was remiss in mentioning your wonderful blueberry crisp, and thank you again for a very, very nice evening. Thanks to Joey and Mikey too for making me laugh....you guys are great entertainment. Love to you all.

I'll write tomorrow to keep everyone posted.
All our love,
Bob and Mo

Day 2 2nd HUP Stay

Dear friends and family,

Just wanted to let you all know Bob's doing fine. He's on the Nurse Practitioner (NP) service this time, which Dr. Stadtmauer oversees(some of you remember him from Debs' stays). Anyway Dr.S. and the NPs' were in today and decided that Bobs' Hickman cath should be removed after hearing about the bad episode he had last evening w/ the fever and rigors(uncontrollable shivers and chills). Even though there weren't any cultures back they didn't want to chance Bob getting a blood sepsis, and if the line didn't come out today, it would've had to wait til Monday, since it had to be removed down in IR(interventional radiology). So he went down and had it removed uneventfully, and has remained afebrile since than. His vitals are all stable, his appetite is, need I say, unaffected, and his counts are all okay. The platelets dropped to 27,00, but that's due to the infection. His wbs'c are 3.2 and ANC is 750, which is also probably up from the infection, though not even to a normal level yet. The plan right now is wait and see what the cultures show, monitor his temps and counts. If he remains afebrile, he may come home after the weekend. Theproblem is that he is most likely going to need IV antibiotics for some time, and he will have to have a line placed for that. Unfortunately they can not put in a central line if there's any possibility of blood infection, b/c that line will become infected also. So they may place a PICC line in his arm. He's had that before when recovering from his leg wound 2 yrs. ago, and he can get the ABX at home thru that. So we're playing the waiting game for the weekend.
In the meantime he has his cd's(Gilbert&Sullivan and Barber of Seville), dvd's(Victory at Sea....the whole series which I found at Wal-Mart for 5 dollars) and novel(that same series his nurse Ethan recommended the last stay) to occupy the evening hours which he seems to find is the longest part of the day. He's not doing the sudoku this time around, even though he still does them at home. There's a little less adjusting this time, since he knows the routine and what to expect, and also knows the staff. Even those who aren't his nurses this time have stopped in to say hello and congrats on the remission, and as usual they are all wonderful.

Well, that's all the news for now. As always,please keep us in your prayers, as well as our darling Debbie, who has made the very courageous decision to have a mini(ha!) stem-cell transplant and will be admitted on 7/19 to begin that risk-laden procedure. We are all recipients of our own mini-miracles and have seen what the power of prayer can do. Deb, I know you are going to sail through this b/c all the love and friendship you've given of so freely is going to come back and carry you through. I just feel it. I'll give you a call tomorrow to take you up on that cosmo offer.

Hope everyone has a good weekend. The weather's supposed to cooperate for a change. Enjoy it.

All our love,
Bob and Mo

Back at HUP

Hi all,

Well, I'm going to try and make this quick as I just got home from Penn a few minutes ago. Bob is back in HUP, on Rhoades 7 again. He started sneezing his head off last night and than got a little temp of 99.6. We thought he was starting w/ a cold, and he felt good this am, no fever, no cough etc. So, I went to work...believe it or not, my first day back since he came home. I spoke to him around 10:30a and he was fine. The visiting nurse had been here to draw labs and he still had no temp. Well, he called me at noon to say he was getting chills again, and was calling Dr. Luger to tell them he thought his Hickman cath was infected....remember this is the same central IV cath he's had in since March, and both episodes of fever came about 1 hr. after the lines were flushed. Dr. Lugers office called right back, said come on down and pack a bag. Now I must give them all the credit today, b/c we left the house at 1p and Bob was in his room by 3:30pm!!!! He's been started on IV abx, had a chest x-ray, and they are going to keep him on round the clock tylenol to try and keep him afebrile....when his temp went up tonight he had rigors the likes of which I have never seen. They had to give him IV demerol and ativan, and they still lasted over 30 mins. However I am happy to report that before that he did eat his crumbed chicken dinner!!!! By the time I left, his temp was on its' way down, and I freshened him and his bed, and got him set up w/ the dvd player. They are pretty certain that his line is infected, b/c once again, this episopde came after they drew blood out of it and flushed it. So, while they will not take it out until they have a positive culture, and than only if it's a resistant microorganism, they will not use the line anymore either. So Bobs' nurse was starting a peripheral IV when I called to say I was home, and he'll have to get stuck for labs, but the shaking and chills were so bad, he now has neck and back pain and needs codeine and flexeril....so he said he's happy to get pinched a few times to not have to go through the rigors anymore.

Wish I was writing w/ more good news, but hoping and praying this is just a bump in the road that will be taken care of quickly. Please keep us in your prayers again(I know you haven't ever stopped) and please send along a little blog for him to read. He's really down in the dumps over this. Thank you all for being so supportive and encouraging, and sticking w/ us through it all....it means more than you'll ever know.

All our love,
Bob and Mo