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.

Sunday, April 30, 2006

Day 33 Admission------Day 13 HiDAC

Hi everyone,

Just a quick update(I swear!!!) on Bob. He continues w/ fevers...today it's up to 102...so he's feeling pretty punky. When I talked to him at 3p, he was going to try to nap. His hgb is stable at 8.4, his platelets are all the way up to 45,000(both nurses commented on the last platelet pack being the largest they had ever seen, and I guess they were right) and of course WBCs and ANCs are nil. An ID dr. was in this morning and changed the antibiotics b/c one of the blood cultures was positive, but the bug hasn't been identified yet. Also the CT scan of his chest basically showed the same small collection of fluid that the CXR did. Bob remains asymptomatic from a respiratory standpoint. So, there are a few infections brewing, but nothing unexpected and the staff are right on top of it all.

As planned, I took today off, and want to thank Sam for stopping in to see Bob. He said it was good to have a little company, but the fever is wearing him out, so he didn't mind just resting up today. The bone marrow biopsy(BMB) is still planned for tomorrow, so I will try to be there for that, but no time has been scheduled. Please say an extra prayer tonight, and send all your good thoughts and vibes HUP-ward tomorrow, that the procedure goes well and we hear great results in a few days. Thank you for everything, especially all the blogs the past few days...Bobs' gonna be thrilled to read them all tomorrow.

All our love,
Bob and Mo

P.S. I forgot to tell you that I looked up the Red Cross, and they say to call 1-800-give-life to donate blood in someones' name. They also always need platelets, and Lord knows Bob and Deb have gone through their share of those also. To give plts. is basically the same procedure( just one stick), but it takes about 2 hours b/c they separate them as they are taking your blood out...it's called apheresis. There don't seem to be any blood drives at present in the Harleysville area, but I only tried my zip code, so there may be others around. Thanks, Mo

Saturday, April 29, 2006

Day 32 Admission -----Day 12 HiDAC

Hello all,

Well, Joe T. and myself had planned to take the train in together this am, when Joe called and said Debbie was discharged(d/c'd). She has been w/o fevers for 24 hours and her WBC's were up to 7, so despite still being SOB and tired they felt she would be okay at home. I had planned to drive down w/ Joe and take the train home, but than we heard that there was work being done on the R5 and it was neccessary to switch to a bus for part of the ride ,which just sounded too involved, so I had a quick visit w/ Bob today and came home w/ Debbie and Joe. Actually the timing was perfect b/c right when we were leaving Bob was, as he puts it, "getting ready to zone out". He needed platelets today, and the 50 mg. of benadryl was working its' magic. He slept the afternoon away and just told me it was a good day. He also had a great visit in the am w/ Mary T. and Kim B. from Trivalley before I arrived at noon. Kim and Mary brought this huge smiley face balloon which all the staff members kept complimenting, and they caught Bob up on the TVP move and all the latest news. Thanks girls, he really enjoyed your visit.

I thought Bob looked better today. His hgb is stable at 8.8 and his color was so much better than yesterday. He has a temp right now as I write, of 101.6, but they only culture every 24 hours, and he had all that done at 10pm last night. So they'll do all that at 10p tonight, if he still has the fever then. And yay! for our guy...he got 3 laps in today, between the platelets and the fever. He said he tolerated it really well, didn't get too pooped or SOB. He ate a good lunch while I was there, but did admit to doing so b/c it's just in his best interest. He says it's not enjoyable at all as everything is so tasteless. His nurse Kate chimed in w/..."probably not a bad thing"...my same sentiments several days ago. But he's got a tempting treat of 4 different types of mini-cookies to go w/ his milk tonight thanks to Candy and Aunt Millie.

On to comments from himself;
To Ann M.,(and others who have asked that I can't remember now), Bob said he knows the Red Cross has to be involved when you want to donate to somebody specific. I'm (Mo) sorry, I didn't get a chance to check this out on the web.

To Cozz!!!! Bob says "Gumba! Quesce dice? Milli gratzia for blogging." And we both offer our Congratulations and Best Wishes to your son and his wife.(Sorry Elizabeth, for what I'm sure is a desecration in spelling of the Italian language).

To MDF, Bob said "funny you shoud mention" the ferry to San Francisco. He remembers it well, and just read an article about it and Angel Island in the Smithsonian Magazine.He bored me w/ a whole other history lesson about "the Ellis Island of the Pacific", so thanks Mare. And yes, Bob was able to read again this am. Thanks for the suggestion of the audiobooks though, Kris. Something to remember just in case.

To Katie Mazzola, Congratulations on the new play (wish we could see you in it), and Good Luck w/ Vt.


To DJ...sigh...it's tough being a Philly sports fan.

To any of the Mazzolas...how's Billy doing w/ the WWF?

Yikes...can I just say Phew!!! It always takes me longer to type when Bob has comments...I may start omitting punctuation soon.

I'm not going to HUP tomorrow as Bob insists and I have to say, while it pains me not to see him, it does refresh me also. This is all by way of asking...if anyone's hanging around looking for something to do, I'm sure Bob would love a little company.

Okay, I have finally run out of things to say, except my usual request to remember us in your prayers. Thank you one and all for the blogs, calls, cards and gifts. We couldn't get by w/o all your support.

All our love and thanks,
Bob and Mo

Friday, April 28, 2006

Day 31 Admission Day 11 HiDAC

Hi everyone,

Gonna try and catch you all up to speed. I ended up taking the train down w/ our friends Lee and Yvonne today. I was thankful for the company, since I never took the train past the gallery before. It proved to be so much easier than driving. I wish I'd started doing it weeks ago. But at least I know now. If anyone is interested I took the R5 to Market-East, and than the R1 to University City. Didn't even have to go far to a different platform, really just turned around after getting off the R5 and we were directly in front of the R1 stop.(reading this over, I sound like such a hick...if we lived in Boston, I'd know my way around and inside out,but I don't know Philly at all.)

So, Bob had a decent day. He looks wan and tired, but really enjoyed seeing L & Y, and especially enjoyed the kugel that Yvonne made just for him. Alright, I had a sample too...well, he can't eat all that. It was delish.
Bobs' counts came up nicely today after the blood yesterday. Oh and while I'm on that subject, Ann M., the staff says anytime you can donate blood, it's needed. The nurse I spoke with wasn't sure about donating it directly in someones' name, but I'll look into that further. Actually now that I'm thinking about it, Red Cross must have a website. I'll check that out. Anybody out there know any details on this, or of any blood drives in the area? Let us know okay?

So, Bobs' hgb was up, but the last chest x-ray(CXR) showed a spotty area in the left lung. Maybe fluid, maybe pneumonia. At any rate he went for a CT scan of his chest this afternoon, so more on that as we get it. But, he's not SOB and his oxygen saturation is high(a good thing), so he's stable as far as that goes. Today his temp only went as high as 100.4, so maybe the fevers are going to take a hike. He continues to lose his water weight and the ruddiness caused by the steroids, so he's not looking like jolly St. Nick anymore. Oh, and horror of horrors...his mustache hairs are falling out. This is something we are going to try to milk...pay a dollar, see the mole.(I'm not explaining that. It's a joke from weeks back). His appetite is back and all is well in the GI regions again. His eyes are the biggest source of discomfort and frustration now, as they are tearing constantly and he can't read. But he's watching DVDs and listening to CDs, so thank heaven for modern technology.

Now, Mary Day, the Penn relays are this big ,huge deal in track and field. High schools and colleges from all over the country take part. I saw buses today from N.Carolina, Va. and Indiana, and that was at 7pm. And it's at Franklin Field, which is U of P's outdoor stadium. So it's chaos there, which is why we are taking the train. Also Bob said to tell you...yes, that is the type of book he likes, and the women are the heroes(heroines?) and of strong character.

Bill, the author is George R. R. Martin, and the first book is called A Game of Thrones. Can't think of the names of 2 and 3, but I'll get it for you. I would certainly appreciate you doing that, dear. And Anne, what is with your dog??? How, exactly, do you know she has a sprained knee? Is she limping? Does she need some of Bobs' "roids"???

And Kimmy, I kept forgetting to tell you that Bob received a card from a Sr. Antoinette Marie, who said she is a friend of Gerrys', and she and her Mercy sisters are praying for Bob. So please thank your Dad for that.

Sam, Bob just says no to Playboy. And what do you mean you don't pray? You play the guitar and sing at Mass. That, in my mind is a very powerful form of praying.

Now, dear BarBRA, thank you for the support. I have to tell everyone that yesterday was just an off day for me. Things just seemed to get overwhelming, and I was whining to a friend, who subsequently blogged as Barbra Streisand. I swear it wasn't me...this didn't even occur to me until my niece Megan said she thought I was Barbra. Anyway, I wanted to say that I know you are all praying for us and thinking of us even when you don't write, and I know that's what is important. I just had a bad day.

Soooo...THANK YOU, THANK YOU, THANK YOU, for the blogs and cards and calls. And as always, please remember us in your prayers, as well as our friend Deb, who also may have some pneumonia or other lung problem going on.

All our love and thanks,
Bob and Mo

P.S. To Candy and Aunt Millie, we received the package of goodies. I'll take it down w/ me tomorrow. Thanks, Bob's really into cookies and milk at night down there.

Report of Day 30 Admission Day 10 HiDAC

Good morning everyone,

Let me say right at the start, Bob is fine. I didn't post yesterday b/c I just needed a break...a day away from the computer. I didn't see Bob yesterday as I had several errands to run that had to be done during "business hours", but I talked to him frequently and he had several phone calls which helped to lift his spirits. I'm going down today, but will take the train as the Penn Relays are in progress, and we're told it's sheer bedlam in the U of P area now. So, I'm sorry if I frightened anyone, certainly not my intention. Now to Bob.

Wednesday afternoon Bob spiked a temp and was put through all the paces of the "checking for infection" routine. He had a CXR, blood cultures and urine culture...was given tylenol and the temp broke. He also started to have some lower Gi issues(read diarrhea) and is being given immodium for that problem. He's still eating, but not w/ his usual gusto. He had only a fair nights' sleep on Wed.

Yesterday he needed 2 units of blood(remember on Wednesday they didn't want to transfuse him for hgb 7.8 b/c they thought he was too fluid overloaded?) and platelets, so he went the way of the benadryl once again and had a sleepy kind of day. The GI issues settled down a bit, and he was able to rest. In the afternoon however, he had another fever and went through the whole culturing bit again. The temp came down after tylenol, and he he slept "pretty good" last night. Which probably means 3-4 uninterrupted hours at a time. When I talked to him yesterday he sounded out of sorts(i.e. grumpy). And who can blame him? I have to say that's truly the first time in over 4 weeks that I actually heard impatience in his voice. As I've said before he has been such a trooper...just amazing!

This morning he sounded like his "old' self. He was sitting up in a chair trying to read(his usual after breakfast routine). Unfortunately he now has conjunctivitis in his left eye and constant tearing which is making reading very difficult. He's on drops for that, but I think it's going to be a bit till they start working. It's such a shame, b/c reading has been a real saving grace for Bob. He's been so pleased that he's been able to concentrate...actually more than that...he says he's really able to focus on what he's reading and get a lot more meaning out of things than he usually does. So I hope that clears up soon. Any tips or input from my MSC pals would be most appreciated.Hint hint Holly, Deb, Dr.N.

Bob's still in the "nadir" as all the oncology professionals are so fond of saying...meaning that his white count is zero or barely above. He has no neutrophils(the white cells which fight infection), which makes him susceptible to all kinds of germs etc. He's due to have his bone marrow biopsy(BMB) repeated on Monday or Tuesday, and we'll learn the results of that a couple days later. In the meantime, we're just hangin' in, or maybe that should be hangin' on. This is beginning to feel like the long ordeal we expected. I know I shouldn't whine, especially with the two shining examples of stoicism I see every day...Bob and our good friend Deb T. Please remember Deb in your prayers too. She is still at HUP w/ high fevers from her chemotherapy.

As always I thank everyone from the bottom of my heart for all the support. The cards, calls, blogs and visits are holding us up. Without them I'm sure we would be downward spiralling. Really, I can't explain how much it means to feel your love.

All our love and gratitude,
Bob and Mo

P.S. If anyone wants to visit Bob he is certainly up for that. Maybe I should've come out and said that before. Just please give Bob or me a call to make sure he'll be available.
  • Bobs' room phone....215 615 8116
  • Mos' cell.................610 322 7142
  • Home phone...........215 855 9246

P.P.S Hi Mandi, just read your post, and this is probably strange writing to you on here, but Bob and I would love to meet you also. You are welcome to visit anytime at all. I know Bob would give a hearty seconding to that.

Wednesday, April 26, 2006

Day 29 Admission Day 9 HiDAC

Hi all,

Geez, it just doesn't seem possible. It's 4 weeks today since Bob checked into the "Hotel Pennsylvannia". Thank God there are no mirrors on the ceiling, but a little pink champagne on ice wouldn't be so bad. Anyway, I digress. Bob is feeling okay today. A little weak since his hgb is down to 7.8, and the attending on now didn't want to give any blood since he thinks Bob is still fluid overloaded(despite getting lasix IV at midnight last night). That is a powerful diuretic and Bob was up all night in the B.R., which is just ridiculous. His BP wasn't even that high at the time. I told him this am(and the attending seconded it) to refuse it if they try that again. It's hard enough to get any sleep in here, and lasix should be given in the am. It's not even the treatment of choice for high BP. Phew...now that I got that off my chest. I've been here since 11am, also visiting our friend Deb, who is back in with neutropenic fevers. They can't find any source of infection, and feel that it's just from her chemo. Poor thing, she has been through the wringer, and still manages to take what they dish out with such good grace.

Bob just finished dinner and is perusing the new TIME mag. whose cover story is about MDs as Pts. I couldn't read it, too close to home, and Bob tried to get his drs. to discuss it, but they weren't touching that subject either. Anyway, just interesting...timing. He's finished the LOTR(books), and is now onto a historical novel. He's also going to watch a DVD of Lord Wimsey tonight...an old BBC series that i dug up on Blockbuster online. He already enjoyed Basil Ratbones as
Sherlock Holmes(thank you Yvonne and Lee), and the Fellowship of the Ring dvd also. This little player is really coming in handy(thanks to Deb and Joe until Matts' arrives).

So everything's holding pretty steady overall. No fevers "yet", to quote Bob and he continues to eat well, as he told Sam today, "in preparation for the time when I can't eat". Hopefully that will be a very short period when it occurs.

Thank you one and all for the cards, calls, visits(Sam the man, we thank you for coming today)and blogs. I repeat, it means so much, more than words can say.Please keep us in your prayers, and keep the good vibes coming.

All our love,
Bob and Mo

P.S. To Peg, if you look back on yesterdays comments, Santa wrote about the town in Ohio where Donata will be.

PPS. To Donata, good luck with that whirlwind schedule....can't believe you're done Mannes already!!

Tuesday, April 25, 2006

Day 28 Admission Day 8 HiDAC

Dear friends and family(I always feel like MCI when I write that)

Bob had another good day. He did need platelets again, but his hgb is holding at 8.1. My niece Kate was off today so she accompanied me to HUP. We arrived at 10am and stayed until 3p, so we had a nice visit. When we got there, Dr. Tom Sollecito, an oral surgeon who sends his regards to Lon Butler, Bobs' periodontist, was just finishing up an exam of Bobs' gum wound. He pronounced it clean and looking good, which is always nice to hear. Bob didn't lap since he got the benadryl pre-platelets and was sleepy and thick-tongued from that, but was going to try to walk tonight. His BP is holding in the 140 range, but he lost 5 pounds overnight, so I expect as the fluid comes off, the BP will come down. And in the interest of helping you bloggers maintain your girlish figures, I'll just say that Bob enjoyed some goodies from home and a doggy bag from Chef JT. Oh and Bev, Bob says he doesn't need any candy, but thank you. He has 2 boxes of chocolates in the room and I think I've eaten most of it.(Sorry Anne, don't go and eat chocolate now.)

Now speaking of candy, Bob has a message for Candy. It seems that one of Bobs' nurses, Ethan, shares Bobs' love of high fantasy fiction, and highly recommended the book you gave Bob. However it is the 4th in a series, so we're going to look into getting the first 3 as Ethan says it's better to read them in order. Bob also has really been enjoying the book about C.S.Lewis and Tolkiens' friendship, and wondered if you or Sammy brought that the day you visited.

Also wanted to ask SantaC to please supply some info about the Ohio town that Donata will be in for the summer, as Peg B. was asking about her. Hi Peggy. Bob says congrats on the new house, hope the move went well, and I wanted to say I love that line you use from Cold Mountain, but I can't remember them using it in the film(km).

So that's all for now. A great big thank you to EVERYONE for the blogs, cards, and calls. Please continue to remember us in your prayers.

All our love,
Bob and Mo

P.S. I have to join Kim in dissing MDF....where are you girl???

Monday, April 24, 2006

Day 27 Admission Day 7 HiDAC

Hi all,

Well, this is REALLY gonna be a quick note tonight. There's nothing new to report. Bob's feeling well, with his hgb and platelets both in the acceptable range today. He managed to walk twice today...3 laps each time. He's had no fevers, rashes or infections, and his appetite remains great. His BP is holding in the 150/75 range. The last dose of high dose chemo was given this afternoon, and he's off IV fluids. So, this is where the waiting game begins.

Please keep praying that the chemo has knocked out this blasted AML, and Bob is in remission. Thank you for all the cards, blogs gifts and calls. We know you are with us, and that means everything.

All our love,
Bob and Mo

Sunday, April 23, 2006

Day 26 Admission Day 6 HiDAC

Hello everyone,

Just a quick note to let you all know that Bob's doing well. Megan and I just got home after visiting with Bob, and than sharing a delicious chicken dinner and homemade cobbler with our friends, Lee and Yvonne. We also sponged last night off of Joe and Deb...feasted on Joes' famous eggplant parm and FABULOUS spaghetti Bolognese. Thank you all for keeping us well-fed. Don't worry, we have doggy bags for Bob, although he continues to enjoy the desserts the most. He had a good day with lots of company. His cousins Rick and Joan, his patients George and Aniko, and my brother and sis-in-law Tom and Anna, and of course our nieces Meg and Kate. Bob thanks you all for the fly fishing book, Amarone, and pastry. He was enjoying the cookies tonight with his usual spot of milk.

Bob continues to need blood and platelets, but has had no fevers yet, despite having no white cells. His BP was still elevated today and he got another shot of lasix(diuretic) and was started on a med for his pressure. They have cut back on his IV saline so that should help also. He has 2 more infusions of this round of chemo...tonight and tomorrow afternoon...and than we wait. We want his WBC to stay low...that means the chemo is working....but hope for no serious infections while it is down. So that's pretty much where we stand...so far, so good.

A couple comments from himself...Bill,Bob says a true Maiar would not talk in this manner(that's in reference to your comment about Santa liking the Two Towers...hopefully you understand this cuz I don't). And as far as all the food discussions Bob says Dr. Perl told him the one thing you can do that will help you get thru the chemo is....EAT! Yeah!!! Something Bob is terrific at.

To Santa, yes I finished 2 towers and am onto Return of the King.

To Kris, yes the Sudoku is addicting and it's especially difficult when you're given benadryl every 24 hrs.(pre-platelets last 3 mornings in a row).

So much for a quick note...y'all didn't really believe that when you read it, didya?

Thank you one and all for hanging in there with us. Thank you for praying for us and sending your love and good wishes. Please keep praying and blogging and staying in touch. It means so much to both of us, but especially to Bob. I think he's starting to get a little lonesome, poor guy. I would've been pulling my hair out by now, but he's such a trooper. I am so proud of the great attitude he continues to maintain.

All our love,
Bob and Mo

P.S. Bon-Bon, I'm hurt...."your true friends"???? As Claree said to Wheezer in Steel Magnolias...."you know I love ya' more than my luggage". By the way, your blog was great, just on the wrong page, and you can skip the chicken. I want the homemade chips and licorice!!!

Saturday, April 22, 2006

Day 25 Admission Day 5 HiDAC

Hi everybody,

Hope everyone's keeping warm and dry on this very miserable Saturday. I wanted to see Bob today, but he was quite adamant that I take the day off, and I must admit I didn't protest too much b/c of the rain. He's had several phone calls which helped while away the time, and when I spoke to him last he was doing sudoku. He hasn't walked today b/c he got platelets again. They had only risen to 17,000 after yesterdays infusion, and his WBC is 0.2 with ANC(absolute neutrophil count) already at zero. So Bob has no immune system to speak of at this point. He sounds very chipper right now though, and was feeling good too.

We wanted to say Happy 90th Birthday to Mary R. Hope you have a wonderful time at your party w/ all your family. Thinking of you today too Anne...hope everything went well.

That's all for today. Thank you all for your support, and please keep the good vibes and prayers going.

All our love,
Bob and Mo

Friday, April 21, 2006

Day 24 Admission Day 4 Hi DAC

Hi everyone,

Well, Bob continues to hang in there. He's showing the effects of the steroids again with his full face and red cheeks. Also gained 17 pounds from fluid retention. He receives a liter of saline every 8 hrs. via IV's, and this has caused his BP to hang around 150/80, so this afternoon he got a diuretic to get rid of some of the fluid they are pumping in. His hgb is up today after the blood, but he needed platelets, and was quite dopey and thick-tongued when I arrived at 10:30, from the benadryl pre-med. He didn't walk today b/c his BP goes even higher w/ exertion, and felt like washing up was enough exercise. Also still getting winded w/ activity. The final report of the bone marrow biopsy showed that the leukemic cells(blasts) were quite high after the first round, in fact they are up to 90%. I spoke w/ one of our drs. today and he said that AML from MDS(myelodysplasia syndrome), or what they refer to as secondary AML, is very unpredictable, which makes it hard for them to get a handle on it, since it does not respond like primary AML. Again this is nothing that we haven't been aware of. We never expected remission after the first round. We are however hoping and praying that the high dose will do the trick. We have not discussed any options beyond that point. Bob will finish this round on Monday, and have a repeat bone marrow one week after that. But for now we are taking this one day at a time. He still has to go through his counts crashing(their term) from this round. And in that vein, Bob requested that the oral surgeons come back again to check his gum wound, which they did about 2 hrs. after he asked. They are pleased w/ how it looks, and I am thankful that our drs. respect Bob enough to listen to him. I checked in w/ Bob when I got home(after a TWO HOUR RIDE on the road that must-not-be-named), and he was eating his dinner, and thinking about taking a lap or two this evening. Oh, and the last chest x-ray that was done was clear. Sorry, one of the things I kept forgetting to write.

Now, I'm sorry Bill, but Bob wanted to tell you that the Easter pie was savory...eggs, ham, ricotta...thinks it's called pizza rusticana or pizza gaina(spelling?). Also you were probably too young to remember.

And to Kathi I have to ask...Are you serious about bkh and Cooks Illustrated? Are you talking about the same bkh whose specialty when her kids were growing up was Chicken in the Red Sea(Ragu)??? Do tell. Bob and my inquiring minds want to know. Gee Bon-Bon is getting a lot of "air time" here for someone who doesn't write!!!
Okay, no further food discussions.

One other thing I've forgotten for days is to thank Joanne Nasife for stopping in to see Bob. Joanne is the daughter of one of my tennis buddies, Cathy, and is going to be working at HUP as of May 1st(she's a nurse, as well as a lawyer). But of all places in this huge hospital, she's going to work on Rhoads 7. So thank you Joanne and good luck w/ your latest endeavors. I'm sure we'll be seing you soon.

Bob and I also wanted to say hi to one of our "games night" crew, Shirley, who had knee surgery today. Hope everything went smoothly and I'm sure "my MSC girls" took good care of you. And to the other games crew members Bob says "Stop playing Poker" or fight nice. Also, Lee, since we didn't win, do I still owe you money for the lottery tickets??? Just kiddin.

Thank you as always for your support. Please keep the prayers for remission going. We need them more than ever, but remain hopeful, and are keeping our "peckers up".

All our love,
Bob and Mo

Thursday, April 20, 2006

Day 23 Admission Day 3 HiDAC

Hi everybody,

I'm posting from Rhoads again as I didn't arrive today until 1p. I had a phone interview to do for Bob w/ a Soc. Sec. rep this am. So I wanted to spend some time with him and will go home around 7p. So far he's tolerating the HiDAC really well, and of course the steroids, as promised are doing their thing. As he told Gerry C. this afternoon...."no knee pain, no back pain, no neck pain". He just finished his dinner of roast beef, mashed pots. green beans and carrots. He has a slice of angel food cake set aside for his evening snack, which at least resembles angel food cake. The last time he ordered that, what arrived looked more like cornbread. Anyhoo, enough about the food.

Bob is managing to walk, but the difference between this round and last is already very obvious. He's slower, and isn't able to talk and walk at the same time due to SOB(shortness of breath), and only does 1-2 laps at a time, but at least he's doing it. His hgb was 7.5 this am, so I'm surprised he walked at all. He did receive one unit of blood and will most likely need platelets tomorrow, as they were down to 22,000 this am. His WBC is 0.3, so that has fallen already. I'm not sure if that's an effect from this chemo or the last. At any rate we are being very careful to prevent any infections. Bobs' mouth wound looks good. He's religious about doing his mouth care, which is a good thing. Oh and he's finally had a few GI side effects...let's just say constipation is no problem right now. His c.diff is negative however, for all you medical people out there.

That's about all the medical news to report today. Bob did have one message for all his compadres at Tri-Valley who are blog-readers......if you want candy you better become blog writers!!!! If you need to be filled in....ask Dr. C. Mo says Good Luck with the move tomorrow.

And I want to send a note to YA, b/c I keep forgetting to tell you this. I'm reading another Elizabeth George(when Bob is not interrupting me every 60 seconds to tell me about every word he's reading in Cooks' Illustrated), and there's a character whose name is Yvonne Livesley! How close is that? I think of you every time I see it.

Time for me to offer up our thanks and appreciation for every bit of support and love that are winging our way. Please keep the prayers and good vibes coming. I have a feeling I'm forgetting something, but I'll P.S. you all later if I think of it.

All our love,
Bob and Mo

Wednesday, April 19, 2006

Day 22 Admission Day 2 High-DAC Chemo

Dear friends and family,

Well, you have probably noticed the change in the title. We learned last night(2 days early) that the first round of chemo was not very effective. We won't be given percentages until Thursday, but the preliminary blood smears of the bone marrow showed very little change in the leukemia. So Bob was started on high dose Ara-C(hence, high-DAC) at midnight last night. This was not something unexpected...75-80% of AML pts. need a 2nd round of induction therapy chemo. It was a little surprising to get this news so quickly, however. ARA-C is another name for cytarabine, one of the original agents used 2 weeks ago. But this time around the dosage is 30 times greater. This is scarier, b/c the risks are obviously higher. The drs. expect Bobs' white count to fall quicker and stay down longer, so the chances of infection are much greater. This dosage can affect lots of other things too, one being your eyesight...so Bob has already been started on steroid eye drops. He's also back on the decadron(steroid)-zofran regime to prevent nausea, so he'll be getting the added benefit again of painless joints, increased appetite and elevated mood(gotta look for the silver lining, right?) In fact he had no fevers today and got 3 laps in before lunch. He was bushed however after washing up, and needs to rest after any exertion. He ate a good lunch(taste buds...who needs 'em?) and than started on The Two Towers. By the way, Istari6, Bob says to tell you he's reading the trilogy again. Bob is also back on IV fluids, so he lost some freedom, as he's always attached to the IV's and pump. The chemo is given twice a day over one hour, so he also needs to rest while that's infusing. He'll receive a total of 12 doses, so we're looking at another week to give the chemo, and than another 2 weeks for the counts to fall and rise. I don't know if I explained too clearly, but the goal is to wipe out the leukemic cells from the marrow. Unfortunately, the chemo also wipes out any good red or white cells and platelets. So we can expect many transfusions of blood and platelets to come. Our hem/onc MD, Dr. Luger and the attending, Dr. Perl both spoke w/ Bob today(I of course just missed them even though I got down there early) and told him that everything that's happened so far is exactly as expected. That is comfort of a sort, but it hurts me so to see Bob have to go through this. He is such a good man and so undeserving of this trial. Forgive me that maudlin moment, but anyone who knows Bob is certainly shaking their head in agreement. Thank goodness Bob himself does not dwell on that, but being his practical self says this is the hand we're dealt, and we have to play it. So, I take my cue from him and soldier on.

Honestly, this wasn't meant to be a depressing post. In fact, Bob was quite chipper today and had some more comments:

To sweet, little Kim, Bob says he's always prepared for a "blue" streak from your mouth. He remembers the old days in ICU.

To George and Aniko, Bob says it's very good to hear from you, and you should use more Amarone and less amiodarone.

To Hatfield Girl and Music Man(new moniker?), Bob loved the specially-tailored, check list get-well card. Very original.

To all the "elderly" bloggers out there having trouble w/ the small type, Bob gave me a hint for you. You can increase the size on your computer by going under VIEW on your toolbar, scroll to text size and choose large or larger. Whaddya know...this actually works, I tried it.

To Kate, Uncle Bob says hang in there kid...your braces will be on and off before you know it. And make sure you show those beautiful teeth when you smile, not like your sister.(Sorry Meg).

I'll sign off here, asking as usual to please remember us, but especially Bob, in your prayers. Also tonight, I'd like to ask you to add one more name to your prayer list...Kathy is my sis-in-laws' best friend who is undergoing colon surgery tomorrow. Anne sends her appreciation for your prayers for her.

Thank you one and all for all the support. It means more than I can say. Until you're actually in a position like Bob and I find ourselves right now, you have no idea of what it means to open a card,read a blog, or get a call from someone who says...just thinkin' about ya'. Believe me, it helps. Thank you too for letting me ventilate here tonight. We love you all.

All our love,
Bob and Mo






Tuesday, April 18, 2006

Day 21 Admission Day 16 Chemo

Good afternoon to all,

I'm posting early since I did not go to HUP today. Once again I did some errands, filled the gas tank to the tune of $37, and I still had about 1/3 of a tank left. Sheesh! What is the reason for this big increase now? I am not keeping up w/ current events too well lately. Also spent lunch time with my good friends at work. It was soooo good to see you all. I really miss the camaraderie we share. I stopped at Tri-Valley also where everyone sends their best, and I have Rhanes' drawing and photo, so I'll take them down to Bob tomorrow. Alright, I don't know what is up with the font today. I hit spell check for camaraderie, and the print is now bolder even though I didn't click on bold.
But on to our guy....Bob's feeling well, just very fatigued again today. He's had no fevers, but needed platelets, and the benadryl pre-med also made him sleepy. He was trying to finish a crossword when I talked to him last, and than was going to nap. He hasn't walked today, but was going to shoot for after dinner, provided the fever doesn't return. I won't mention the actual menu, since in truth I don't know what Bob ate, but he says everything is tasteless now(from the looks of his trays, that doesn't seem to be a bad thing). I'll be going down early tomorrow with some Easter pie from Bev( Bob says his Fathers' family made them, but not his Moms') and maybe a bakery treat to go w/ his coffee. Sorry Bill...does the food talk mean we're regressing? All the doc's were in today, and say Bob's right where he should be as far as his counts go. His WBC was actually up to 0.9 today with an ANC of 146, and his hgb was holding at 8.2 I'll talk to Bob again this evening for an update, but he's been amazingly resilient thus far.

I hope I'm not coming across as insincere, but thank you again for all the cards,calls and especially the blogs. I read them too of course, and they are, in turn, funny, witty and oh so touching. Mary Day and Kim....you are cracking me up!!! I know Bob feels the same way. Every time he reads them, it's as though he's surprised that he should be on the receiving end of such generosity and kindness. He can, in many things be so unassuming.(notice I didn't say in everything.Ha!)

Please keep on praying, and sending all your good vibes(I don't think you all have to stand on your patios to do that, but whatever works).

All our love,
Bob and Mo

P.S. I'm sorry for the very tiny printing at the top of the blog. Obviously, I'm not as computer savvy as you gave me credit for.

Monday, April 17, 2006

Day 20 Admission Day 15 Chemo

Dear friends and family,

Bob had another good day. Looked like he had more vim and vigor than over the weekend. When I arrived at Noon, the hem/onc fellow, Dr. Ara(first name, can't remember his surname cuz we just call him Ara), was just about to start the bone marrow biopsy. Deb, I'm sorry to tell you, but Bob said this one was comparable to having Dr. Luger do it. He didn't even flinch. I especially didn't flinch, b/c Ara said the only way I could stay was if I didn't pass out on the floor. I bit my tongue, and refrained from telling him that I was watching sternal bone marrows being done way back in the 70's, when his mother was wiping his snotty nose. Wasn't that tactful of me? Of course Bob had to tell him that it was a snap and a piece of cake, so he really had a big head by the time he walked out the door. Actually, I really like this dr. He's very particular and knows his stuff, and Bob thinks the world of him, plus anyone who can drill that huge needle into your pelvic bone w/o hurting you, has to be A-OK. So, we won't have any results until Thursday am. What Ara did tell us today that we didn't know before is, that Bobs' cytogenetics on the last BM bx were normal. Now, there are good and bad abnormal cytogenetics, meaning the bad don't respond to treatment, and the good ones do. When they are normal, it simply means that they have one less prognostic factor, or one less clue as to how the AML will respond to the chemotherapy. It seems that this is not unusual b/c of the underlying MDS. The MDS is also the reason that we have not been told what Bobs' subset of AML is. Normally there are 8 subsets of AML...M1 - M8, but when there is a history of MDS it clouds the picture, so again that's one less clue for a prognosis. Basically what all this medical mumbo-jumbo means, is that we have to wait after each round of chemo to see what the bone marrow shows(which we would have to do anyway). Bob also told me today that Dr, Perle said even if there are no leukemia cells(blasts) in the BM, and there is still MDS he will still need a 2nd induction. They also will not wait for his counts to recover if he needs it. So Bob may possibly be starting his 2nd round as soon as Thursday or Friday. Sigh...no rest for the weary.

Alright, as torturous as it was to read and process all that info.....you should have to try and type it w/ four fingers(cuz that's all I use).!!!!

Onto the lighter side...Bob wants to respond to some of the blogs.

To km, Tell BC that he's not surprised you couldn't blog the jokes, and Bob wants to hear them all in person, over hoagies at your shop when this is all done.

To MDF, Bob says" good for you for mocking Mo, I love it." (Mo says, see how honest I am that I didn't omit that nasty comment?)

To all the Tri-Valley gang..."Good luck with the upcoming big move. You all must be very busy and under a lot of pressure. Please make sure and save my photo of Rhane and the "cat-dog" picture she drew. (Now you're under more pressure.)

To BKH(aka "Stonehead") who sent a "sappy" card today, Bob says get with it and get on the blog like your father "the old guy", and your brother. Of course BKHs' father and brother are going to have to pass this message along since she is not reading the blog!!

And lastly to everyone out there, Bob sends a great, big thank you. All the cards, calls, blogs and gifts mean so much. We singled a few out in the name of fun today, but I read them all and your support is keeping me going. I'm hanging in there and trying to kick some butt. As Gerry C. put it so well....Vincero!

I guess you all can read for yourselves that Bob was in pretty good spirits today. Nothing much left to write, except my usual request to please keep the prayers and good thoughts coming.

All our love,
Bob and Mo

Sunday, April 16, 2006

Day 19 Admission Day 14 Chemo

Happy Easter to all,

And it was a Happy one, despite where we celebrated it. As Patty said we were together, and that's all that matters. Meg and Kate were also w/ us. Tom and Anna(my bro. & sis-in-law) were at home cooking dinner, that is until Tom sliced his finger on the mandoline. After a trip to the ER(instigated by Bob to Toms' chagrin),the ham dinner came off w/o a hitch. In fact I am blogging from their house. The girls and I were w/ Bob from 12-5p, and we really had a nice visit. Megan kept us entertained w/ tales of her pre-schoolers at Grandviews' day care. And Kate just always keeps us entertained by being Kate. It's good to see Bob laugh. His hgb was 8.0 today, which is not much of a jump up from 7.6 yesterday after one unit of blood. So he got another unit today. He also got another platelet infusion as his count was down to 10,000.WBC is 0.4 and ANC is 0.
He was still tired today, but didn't feel "wiped out" like he did yesterday. He's had no fevers today, but also received tylenol twice before the blood and platelet infusions. Dr. Perle was in this am and said the area on the CT scan is very small, and as long as Bob isn't having other symptoms(cough, SOB, low pulse ox), they would just maintain him as is. So I have to say that he continues to really hang in there, even w/ these chemo after-affects cropping up. He didn't receive the blood until late afternoon, so if he felt better this evening he was going to go for a walk. He put off his laps today b/c of the severe fatigue, and he does actually get a little SOB(short of breath) with exertion. He ate well today...chicken and turkey, no ham...although he says his taste buds are starting to become affected. I've got ham and scalloped potatoes(Tom says he rinsed off the blood before they cooked them...yeecchh) to take down tomorrow along w/ some of Annas' homemade rolls.

I suppose you can tell by this blog, that I am not as worried about Bob tonight as I was yesterday. Bob forgot to ask Dr. Perle if he still planned on doing the bone marrow bx. tomorrow. His nurse today, Angela, said that was still the plan, but Bob wondered if getting the blood would affect the marrow. We'll find out tomorrow. I'm going to go down either way. But please send all your positive thoughts, prayers and good vibes in HUPs' direction tomorrow, just in case. We love you all, and thank you for the unwavering support. Hope you all had a wonderful holiday, and I'll write tomorrow.

All our love,
Bob and Mo

Saturday, April 15, 2006

Day 18 Admission Day 13 Chemo

Dear friends and family,

I'm writing from the family room on Rhoads. Bob is quite tired today. His hgb was down to 7.6 this am, so he received one unit of blood. Also, the chest x-ray that was done yesterday showed a left lower lobe infiltrate, or pneumonia. The MDs started a new antibiotic, and also an anti-fungal medication since the majority of these lung infections are fungal in nature. Bob also had a CT scan of his chest early this am to get a better look at the area of pneumonia. He has not had any more fevers, but he appears wan and fatigued. He didn't walk today, but he's still eating well. Thank God, but doesn't it figure that Bobs' appetite wouldn't be affected? So, we've had a nice quiet afternoon, chatting and napping(me in the recliner). My parents went home this am, and my niece Megan has volunteered to come and stay w/ her Aunt Reen again. I'm going to be going home soon, b/c I want to get down early tomorrow and spend the day again. I've had several invitations for Easter dinner, and my brother wanted to bring Easter dinner to Bob. Unfortunately, that's not feasible at this point, but I thank him for the thought. I'll bring Bob a platter on Monday from Toms' ham dinner.

Well, I want to get back to my guy. He just finished dinner and is just "laying with my eyes closed". At least he didn't give me the old "checking his lids for light leaks" line.

Bob and I want to wish everyone a Happy and Blessed Easter, and as always please keep us in your prayers.

All our love,
Bob and Mo

Friday, April 14, 2006

Day 17 Admission Day 12 chemo

Hello everyone,

Well, Bob got his first fever today. At 3;30p before I left his temp was 100.8. He didn't feel too bad, but he had blood and urine cultures and a pcxr(portable chest x-ray) done by 4p. He had looked pale when I first arrived at noon, but looked quite flushed by the afternoon, which was why I took his temp. He felt pretty tired today too, and got an infusion of platelets. His hgb was just 8.0 this am, so I'm sure he'll need blood tomorrow. His wbc is 0.5 and his ANC is zero, so for all intents and purposes he has no defenses now against infections. He just finished a visit w/ Deb who also got blood today and had a teeny temp. She is hoping to be d/c'd tomorrow, but must have a temp under 100.5, so we're saying the no fever prayer for her tonight. As difficult as it is to stay in the hospital for so long a period this first time around, (as Deb knows since her first stay turned out to be 47 days) I'm sure it gets harder and harder w/ each subsequent round of chemo that's needed. So hang in there girl, you can do this.

Bob was just going to have his temp checked again, and if it's okay, he was going to do his laps. He only got in one set so far today, due to the fever and platelet transfusion.He cleaned his lunch plate of fish, rice and veggies, and also ate a piece of lasagna for lunch. I'm not sure what he ate for supper, but he did eat, and he's got a snack of cookies and milk all lined up for this evening.

Today Bob had a nice visit w/ friends and fellow ex-LMG'ers, Charlie and Fred. And early this evening his cousins Rick and Joan stopped in to visit also. And like I said Deb was just up too. I'm glad they are there for each other, and I'm repeating myself, but we are going to miss having her and Joe one floor away. Also want to thank JT for the ride into town which was pretty quick, and for showing me a new route home. It took us over 30 mins just to get to the Lincoln Dr. exit today, so Joe got off there and we made it home in another 40 mins or so.

That's about it for tonight. I'll be going down tomorrow, sometime after my parents leave. My cousins John and Connie have thoughtfully offered to take them home to Scranton, so a big thank you to them. Oh, and Bob says thank you to the mystery gift-giver. He received a Villanova cap today, but there was no info about who sent it. As always thank-you to all you bloggers(Bob had a ball reading today, b/c he had 2 days to catch up on) get-well, Easter, mass card senders, visitors and phone callers. We appreciate all your love and concern, no end, and ask that you continue to remember us in your prayers.

All our love,
Bob and Mo

P.S. Isn't this a nicer font? Larger too? My niece Kate showed me what all the little symbols stand for, on the tool bar above where I write this note. I had no idea!!!! Oh to be 13 again and learn all this in school! Can't wait to be able to use "bullets"!!!

Thursday, April 13, 2006

Day 16 Admission Day 11 Chemo

Hi everybody,

Well, we've had very busy days, but unfortunately, not together. Bob insisted that I take another "day off" since he is still feeling fine. I wanted to see him, but he gave me some errands to run around town, I think so I wouldn't feel guilty for not going down. So Kate and I spent 3 hrs. running around Lansdale....picking up dry cleaning, picking up cards for Bob at Tri-Valley, Bank, post-office, grocery store, and Blockbuster. Also snuck a trip in there to Famous footwear, and Kate and I both got shoes. Oops, forgot about Gertrude Hawk too....have a basket to fill for somebunny special(ooh, that's so corny I'm making myself sick!) Than came home and made lasagna for dinner, and will take some down to the HUPees tomorrow. I'm going to go down w/ JT, and hope to spend the whole afternoon w/ Bob.

Bob had a good day too. Counts are all down a few smidges today. And now, anyone who enters Bobs' room must wear mask, gown and gloves. This is not b/c he has an infection, but rather to prevent Bob passing on a MRSA infection to anyone else. In the past when Bob has had problems with infections the germ or one of them has been meth-resistant staph aureus. This is usually a hospital-acquired infection that is very difficult to treat b/c it is resistant to the traditional antibiotics. Now, while Bob doesn't have this at present, he mentioned his history of it to Dr. Perle, who is concerned that Bob could be a carrier of MRSA, and the last thing any pts. on this floor need is MRSA. So all you guys who venture down will now be referred to as yellow-birds,(garb is all canary-yellow)since visitors are still allowed. Just please call me or Bob before you make the trip. In fact Yvonne and Lee Arano were the very first yellow-birds, as they visited w/ Bob today. And I know they wanted to see Bob anyway, but I really appreciate it too, since I didn't see him myself. Bob really enjoyed your visit guys, and says thanks for the sticky buns. He was planning on a little snack this evening after his walk. He's still doing a mile a day, but says he's feeling a little more tired after each round. His appetite is still intact however, and his taste buds haven't been affected so far either.(or maybe they have Deb, and that's why he can eat the HUP trays.) Anyway, he's still eating. He also got to shower again today, and will be able to as long as he isn't hooked up to IV fluids.

So that's all the news today. We again thank everyone for the cards, gifts, blogs, visits and most especially your prayers. Also have to say that Bob is quite touched by his patients who are blogging. He really feels such a special bond with you all, especially those who have been seeing him since he came to Lansdale.

So ttfn. Keep the prayers and good vibes coming. We appreciate them all.

All our love,
Bob and Mo

Wednesday, April 12, 2006

Day 15 Admission Day 10 Chemo

Dear friends and family,

Hooray!!! Bob got his shower today and he felt like a new man, or is that smelt like a new man? At any rate, he felt good. We had another busy visit. My niece Kate went down w/ me today and we visited Deb and her friend Denny in her room, and than Deb came up and we all visited w/ Bob. His hgb was down today to 7.7, so he's really looking peaked, but he received one unit of blood, so hopefully that will perk him up. The platelets were up to 31,000 today, and the wbc are now .750, so we are nearly at the magic number zero. We're anticipating a bone marrow bx on Monday provided things go according to Hoyle. That will be chemo day 14. It'll take a few days to get the results, and than we find out if Bob needs a 2nd round, or if he's in remission. We are not setting our realistic sites on remission, but I can't help hoping for that deep down. Bob is being more pragmatic, as usual, and is counting on the 2nd induction. He still hasn't had any fevers, and the mouth wound continues to improve. Bob spoke w/ his periodontist today, Larry Butler, who is also a good friend that we trust implicitly, and he agreed w/ the whole plan of treatment. So it was nice to get that extra affirmation. Bob had 12 laps in for the day, by the time we left, and he's still not disgusted enough by his trays to turn them away.

Now, today, Bob had a few things he wanted to share...first thanks to Kate and Meg for the hoodie sweatshirts(which will fit fine after a few tumbles in the dryer) the hard candy,and the cowboy sheets. The nurses and aides who came in all exclaimed over how cute! Uncle Bob likes them cuz they are very soft. We'll have to wait and see how his fellow mds weigh in. They probably won't even notice. To KM who wanted to know about Bobs' favorite libation, he says 18 year old Jamesons' Irish whiskey, neat(I should have known that, it's what he always asks for when he's in the hospital). To Sammy C., Uncle Bob says he loves your sense of irony in the play you wrote, and he can't wait to see Bubba Ho-tep. And he's wondering who wrote the unsigned blog re: Fran Dunphy. Now I'm pretty sure I know who that is. Am I right in guessing that it's Bobs' old pal Dora talking about the horsepistol(as Bob always called it) and Temples' new coach?Inquiring minds want to know. Bob also wanted to thank the book and DVD gift givers, Candy, Bill Spellman, Yvonne and Lee, and Sammy.

That's all for Bob, but I wouldn't be true to myself if I let Debbie get away w/ sending her blog 8 times. She is of course cringing while she's reading this and going "I know,I know. I'm so sorry."
Not to worry Deb, I figured out how to delete comments(always wondered why there was a little fire hydrant at the end of each comment....turns out it's a trash can!!! Duh!!!), and there's nary a trace of your boo-boo. But 8 times!!!! I mean 2 0r 3, okay, but 8 times. Ah well, we all know when you do anything you always do it 200%. Love to you, and hope the rash doesn't get too bad tonight.

So that's all from HUP World today. Please keep us in your prayers, and we'll keep you posted.

All our love,
Bob and Mo

Tuesday, April 11, 2006

Day 14 Admission Day 9 Chemo

Dear friends and family,

Well, when the cat's away.....I just phoned Bob(after phoning Deb and getting no answer), and he & Deb were visiting, sharing pizzelles and Russell Stovers. Seriously though, I am thrilled that Deb is able to go up to the 7th floor to see him. I spent the day running around Doylestown and Lansdale(car servicing, grocery store, post office, K-mart) w/ my parents, and I hate not seeing Bob for myself. But Deb says he looks good, a smidge more peaked and tired today. He had another infusion of platelets this morning, and he was pre-medicated w/ 50 mg. of benadryl b/c he had ONE hive the last time he got platelets. So he had a good sleep after lunch, so good that he missed Joe T.s' 3 attempted visits. He knew he was there though, b/c Joe left a PC magazine. And aren't you all so proud of Deb to blog from the family room PC on her floor. You go Deb, and you are funny too!

On a more serious note, Dr. Perle(the attending hem/onc now on rotation) told Bob today that he will probably have a BM bx(bone marrow biopsy) sometime next week. He said they are not expecting Bob to be in remission after this first induction round of chemo, that it very rarely happens when there is a history of underlying myelodysplasia syndrome(MDS). So as Bob says, we just have to gird our loins and expect a longer stay, which is really no surprise. Bob thought 4-6 weeks right from the beginning. Bobs' hgb was a tad higher today at 8.4, and his ANC is down to 150, the lowest so far. So we need to be very careful right now that he doesn't pick up any germs/infections. When he does his laps he now wears a mask and gloves. Bob still feels well enough for visitors, but please nobody who is sick or even has just a sniffle. The MDs say it's practically impossible to get away w/o any infections, but we want to prevent as much as we can.

Bob wanted me to thank everyone for all your kindnesses...blogs, cards, calls, visits, and gifts. He says they all make the stay more tolerable, and he is hangin' in there.

I wanted to say to Eileen...I can't believe you wrote that huge blog all over again(tho Deb says you're a fast typist). I would've said "fuged aboud id", and just said Hi. Thanks for the reminder about St. Peregrine. Gonna try to get to that, if I'm home tomorrow at a decent hour. And I'll see you Thursday.

I'm going to post Bobs' phone number and address again, since I've had some calls about that. Also please share this blog w/ anyone that you all think might want to write to Bob. I've a feeling we've only just begun a very long haul.

Room number_____7005 Rhoads Pavilion
Room phone____215-615-8116

Hospital of the University of Pa.
3400 Spruce St.
Philadelphia, Pa.
19104

As always, you have my thanks, as well as Bobs'. Please keep us in your prayers. So far, so good.

All our love,
Bob and Mo

Monday, April 10, 2006

Day 13 Admission Day 8 Chemo

Hi everyone,

Well, Bob will have his 7th and last bag of chemo(cytarabine) taken down tonight. His IVF's(IV fluids) were stopped this am, b/c he is taking in a lot of fluids by mouth, and he's no longer retaining fluid, w/ his weight having dropped to his admission weight. So all the ports on his IV line will be capped, and he'll be able to take a shower tomorrow. His whole right shoulder area will be wrapped in saran wrap, but at least he'll get to stand half of his body under the hot steamy water for a few minutes. He may be needing blood and platelets again tomorrow, but all his counts were in a holding pattern today. He still remains afebrile, w/o any signs of infection brewing yet. He's still eating well, but he wants to correct the impression that he likes the HUP food. He says he DOES NOT LIKE IT, but it is institutional food, and he doesn't expect it to be good. He feels that it's edible, and as Istari6(AKA brother Bill) says, he ate the liver that Mom, Catherine put in front of him, didn't he? I think what is going to get to Bob eventually, is that there is only a one week cycle of meals, i.e. ,every Sunday is beef tips, every Friday is fish, every Tuesday is spaghetti etc. Now, while he continues to refuse entrees from home, he has become amenable to desserts. He enjoyed the ricotta pie from Bev over the weekend(I thought it was fabulous, and sorry Santa, but there's no recipe...it's from a bakery), dug into homemade peach pie from our friend Yvonne today(also fabulous, attested to by Mo and Deb) and continues to enjoy pizelles(courtesy of cuz Candy) and milk as an afternoon snack. Sheesh, it's a good thing he's still going strong in the lap department...18 total per day, doing 6 at a time. So, overall I'd have to say that Bob is doing great, and all our mds' agree.

Now, I just want to throw some things out there that have been swimming around in my head, and to answer some questions that have come up in your posts. I miss the give and take that we FODs(friends of Deb) had going in Debs' blog, though it would be to hard to address everyones comments every night. First, to Eileen, this is absolutely a pecker-able zone. I should explain...when Deb(my friend who also has AML) was getting ready to be admitted to HUP for her induction chemo, our Scottish friend Nancy told her to keep her pecker up. So there was quite a lot of pecker chat on Debs' blog, and curiosity about whether Deb was actually in possession of a pecker(I'm glad my mother doen't have a computer),when Nancy got in touch again and told us definitively that a pecker was a beak or nose. Phew!!!

Secondly, Mary Day, the ice cream in Bob's mini-frig is unfortunately Jack and Jill provided by HUP, but Bob is even eating that. And no he has not lost any mustache hairs yet, so there are no moles peeking out at me. He does think however, that some of the hair on his head has fallen out...and he can tell this by???

To Santa, Matt didn't have time to pick up a DVD player for Bob before he came up, so Bob wasn't able to watch Bubba Ho-Tep which Sammy brought over. But he was reading Sammys' play when I left this afternoon, so more on that later.

Now, I'm gonna make all the other FODs who are joining us on this blog jealous, b/c I saw pictures today of Emma Grace Khouri, who is the cutest, sweetest little peanut ever. Jess and Walid, she is just adorable, and Mr.C has an absolute, devilish twinkle in those big blue eyes of his. God Bless you all.

I also wanted to say hi to my buds at MSC where I work, at least where I hope I still work. I miss you guys so much. I know you're w/ us all the time. Thanks for the cards, calls, blogs. I'm hoping to get in sometime soon if Bob continues to do well. Is this a CJC Friday coming up? Let me know.

Lastly to kmm darlin', Bob also loves cosmos, so we could continue along that vein. He also loves a dry, tangueray martini, and a good wine(red or white). Maybe I can talk him into a special guest posting from the family room PC at Rhoads, and he could chat about his favorite poison.

I guess by now most of the FODs will have read Joes' blog, so you know Deb is in Rhoads 6, for her 2nd round of consolidation chemo. I hitched a ride to HUP w/ Deb and Joe today. I think Deb was really expecting to come home after seeing her MD, but her platelet count rose dramatically to 180,000, so she was admitted. It will be nice to have their company even if it's only for 6 days. Now I know and so does Bob especially, what Deb meant when she used to say I wish Dr. Bob was here w/ me now. I will not be going down tomorrow, since I am finally going to get the 5000 mile check on our car, and I have to travel to Doylestown for that. But I do feel better, knowing Deb will check in on and visit w/ Bob tomorrow.

Holy cow, have I been chatty tonight? I think I'm just so pleased that Bob is doing so well w/ the chemo so far. We are not however, out of the woods, as Dr. Porter is so fond of saying. Please keep the prayers and good vibes going. As I said before, Bob just loves reading the blogs too, so keep 'em comin' please.

With love and grateful appreciation for all your support,
Bob and Mo

Sunday, April 09, 2006

Day 12 Admission Day 7 chemo

Hello dear friends and family(this includes co-workers and patients, dear to us also)

First I"ll tell you that Bob had a very, nice day. He had visits from his cousin Candy, and nephew and Godson, Sammy. Candy brought along some pizelles which Bob enjoyed with a glass of milk at 4 o'clock. My cousins John and Connie also ventured down and Bob enjoyed their company as well. My parents and I arrived at 2p, and we were all together for a time. It was a nice afternoon. Bob still has a WBC of 1.1 As expected his hgb was down to 7.7 this am and he received one unit of blood. He didn't "lap" until after he was transfused, but he was back up to 6, and Sammy kept his uncle company for the first set. After all the cuz's left I helped Bob get washed up, changed his sheets(cuz we're using sheets from home....HUPs' look like some poor soul beats them w/ rocks down at the edge of the river which I cannot spell), and he rested for a bit. Than he had his cookies and milk, ate supper an hour later, and than it was time for my parents and I to leave. A bit of a whirlwind visit, but a good one. I'll be going down tomorow w/ our friend Deb T. who may or may not be admitted for another phase of her chemo....though it sounds like probably not. But she does have an appt. to see her hem/onc and will be down for several hours, so I will hitch a ride w/ her and her hubby, Joe. Bob also wanted to thank everyone else who has visited, sent cards and gifts and called and last but not least...all the bloggers. He's really getting into the posts and looks forward to them each day.

Now, I just wanted to post some specific instructions about leaving a note, b/c several people have related that they are having trouble.

1.) Directly under my posting click on the word comment. Do not click on the little envelope...that is used to e-mail the post only.

2.)Write your message in the box under Leave your comment, making sure to sign your name.

3.)Select the anonymous button(this saves you from having to enter a username and password)

4.)Click on the login and publish option. A message should come up that your comment has been accepted and will be posted shortly. If there is not a message that says Comment published or comment saved, than your message didn't go through.

5.) Do not click onto the option that says No blogger account-sign here. That lets you set up your own blog. I know b/c I did that the first time I ever blogged on Debs' site. It wasn't until I was told to choose a template, that I realized I didn't want to be where I was.

Hope that helps. It's really not difficult. If you can e-mail, you can blog.

I'll close here. Hope everyone had a good weekend. We send our love and thanks to all. Please continue to keep us in your prayers. We appreciate all the support.

All our love,
Bob and Mo

Saturday, April 08, 2006

Day 11 admission Day 6 chemo

Hi all,

Well, I can't believe it. I was just about to sign off on my posting when all of a sudden....POOF! My blooger site was gone and I was on an MSN support and help site. So, please forgive me, but I am not gonna write it all over again. I'm just going to tell you that Bob is still doing fine. No fevers, or GI upsets. His platelet count came up to 41,000 today and the other counts are in a holding pattern. He visited w/ Matt today, who right now, is still in a plane, but somewhere close to Memphis. I'm so glad that Matt was able to come up, Bob loves him so, and they really enjoy each others' company. It did him a world of good.

I'll be going down tomorrow w/ my parents, after 11am mass. I'm going to take some of Bevs' ricotta-polenta cheese pie down, as well as a birthday present from Bobs' cousin Candy, and candy from my niece Kate. Bob also requested the opera Tosca, as he has a CD player and listens to opera, jazz and Irish folk music at night. He also has been able to read, and has finished one novel already. So between the music, books, crosswords and sudokus he has plenty to keep his mind occupied. He hasn't even had the TV hooked up yet.(Never thought he would voluntarily miss the Final Four, but he did). We thank you all for your continued support and prayers. See ya tomorrow night.

All our love,
Bob and Mo

Friday, April 07, 2006

Day 10 of admission Day 5 chemo

Hi everybody,

Bob continues to feel well and look well. He seems a smidge paler today, though his hgb. is holding at 8.4 He did need platelets today as expected b/c they were down to 17,000. The usual cut-off to give platelets is 10,000, but b/c of his history of GI bleeds, they are shooting for a count of 20,000 w/ Bob. His wbc and ANC are still "trending" down as the drs. say, but that is all on target. Our hem/onc, Dr.Luger stopped in today, and she's pleased w/ Bobs' course so far.

The Man is still a-walkin', tho his knees are not quite as painless as they were the past few days. I guess we can expect the steroid effects to be gone completely soon. The moon-face is already leaving him, as is the flushed color he has had. Bob still hasn't spiked any fevers, and the mouth wound looks clean. And do I really need to repeat that this guy is still scarfing down the HUP cuisine? He has turned down repeated offers of homemade goodies, as he insists the food is really not bad. We have a stash of frozen potpies in the pt. freezer, but have not delved into it so far. He does appreciate having a mini-frig in the room however, and that is kept stocked w/ ice cream, yogurt, and drinks.

Matt and I arrived at HUP this afternoon around 2pm. I only stayed about 1 1/2 hours so I didn't have to contend w/ rush hour. And now I know that rush hour on Fridays probably starts at 2pm. I had a long but uneventful ride home, and I'm happy to report, now have E-Z Pass. Yeeaahhh!!!! Whatever took me so long to do this? It is fabulous! What a difference a transponder makes! Matt was staying for a longer visit w/ Bob, and will see him again tomorrow before his Mom takes him to the airport. I must say I really appreciated Holly transporting Matt so much when he was here. Bob had a great time w/ his son, and told Matt and I how much better he felt, just for seeing Matt. Wish he was closer, but we will stay in close contact.

Not much else to report. I did want to tell Sam and Santa to have a great trip, and be careful w/ the scuba diving. There were other things I read in the blogs and wanted to comment on, but of course, now, I can't remember what they were. So I'll just say thank you for all your support. Bob loves the blogs and really looks forward to reading them each day. Please keep the good thoughts and prayers going. We still have a long road to haul.

All our love,
Bob and Mo

Thursday, April 06, 2006

Day 9 Feeling Good

Good evening everyone,

Well, Bob continues to be in fine spirits, but now I'm sure it's due to Matts' visit. They have really been enjoying each others' company today, w/ the conversation now turned to the finer points of the role-playing games they play on the computer. That is why I am in the family room writing this note. Matt spent last night w/ his Mom, and will come back to Kulpsville tonight to spend some time w/ us. We'll be down again tomorrow and Saturday to see Bob, and Matt will return to Memphis Sat. evening.

Bobs' appetite is still strong despite the gray, soggy mystery meat on his dinner tray(supposedly Salisbury steak, but I now have Matt as a witness who agrees that Bob must be really starving to eat this food). His thrush and conjunctivitis are under control, and the gum wound continues to look clean. He's had no fevers yet, but all of his counts have dropped minimally today. The staff are trying to prepare him for being, in what they call, a leukopenic coccoon. In other words having your life revolve around the fact that you have no WBC or immune system to fight infection. I guess that even though we are aware of what is coming, it is still going to be tough when it hits. They told Bob to expect fevers tomorrow or Sat., and he will also probably receive a platelet transfusion tomorrow. His hgb is holding at 8.8.

Bob's still doing well w/ his laps...6 at a time, for a little over a total mile each day. He also looks quite full in the face, thanks to the steroids. All in all, I continue to be impressed with how well Bob has done so far. I better be getting back to my guys, they were sounding a little rowdy when I left.

We send our love and thanks to all. Matt says hi back to all who sent their regards. Once again, I just can't find the time to answer all the calls and e-mails. I hope this blog will serve to inform everyone about Bobs' condition in my stead. Please remember us in your prayers. We do feel the support and love you are winging our way.

All our love,
Bob and Mo

Wednesday, April 05, 2006

Day 8 Rolling right along

Hi everybody,

Bob continues to feel well, despite a few minor side effects, which needless to say we are praying stay exactly that...minor. He has developed a case of thrush in his mouth which is completely common when you're on ABX, and have a low wbc. That will just be treated w/ an anti-fungal liquid medicine. The drs. also noticed a trace of conjunctivitis, also a common side effect from the chemo. For this he has started on steroid eye drops. Unfortunately they will not have the systemic mood elevating effect that the decadron gives. Although Bobs' "euphoria" has pretty much passed, he is still in a great frame of mind, just not as gabby today. He enjoyed a visit from the Debster herself, who was at HUP for a blood transfusion, and of course the usual cast of characters all make their appearances throughout the day. He also had a nice conversation w/ our sister-in-law Anne who will be in Fla. for the next 5 days w/o blog capability. Lastly, in the side effects column, Bob is retaining fluid, displayed in a 10 pound wt. gain today. Deb said, Ah, that's why your face looks so full. She thought and I agree, that Bob does look remarkable. It must be that great HUP homecookin'. NOT!!! At any rate, the chemo affects the blood vessels and kidneys, and they have to keep an eye on Bobs' output, electrolytes, BP etc. And I have great faith in Dr. Maillard who is the attending hem/onc md. on call, to keep on top of things. Not to mention all the superb nurses who are taking such good care of Bob. All of Bobs' counts were a little lower today, but that is to be expected, and we are right on target so far. His ANC was still over 1000, so he was able to do laps w/o a mask. Once that falls below 1000, we will be in full neutropenic mode...no fresh fruit or veggies, no black pepper(may contain bacteria), strict handwashing, no contact w/ anyone who is or may be sick(cough, cold, sniffles), no fresh flowers. Actually a lot of these precautions are already in full swing on this floor as most if not all the pts. may be immuno-compromised. So, we are pleased with Bobs' reaction to the chemo thus far, and hope it continues.

Bob is eagerly awaiting Matts' visit. He may actually be w/ Bob as I write this. He was due to arrive at Philly Intl. at 5:30 this evening, and he will stay until Saturday. I may take a break tomorrow and let father and son enjoy each others' company. I've also had a "maintenance required" light coming on when I start my car, and would like to get that taken care of, as I have seen those poor souls who are standed on the teeny shoulder of the Schuylkil and do not wish to be one of them. So I plan on having that seen to tomorrow.

Think I'll close there. Someone told me there is a delay in the time that I write this, and the time it gets published. That is my fault. First of all, it takes me quite a while to actually type this message out. Secondly, I may start it, be interrupted, and than come back to finish(as I did tonight for dinner, cuz when Mom says dinner is ready, there is no putting her off. Not to mention that Bob is not the only one who likes food, and I am usually starving by the time I get home). So the time that is displayed, is the time that I actually started writing this note, not the time that I published it. Know what I mean, jellybean? I think I made that clear as mud, didn't I?

Anyhoo, as always, love and thanks to all. You are helping us stay afloat, and that means the world to Bob and I.

All our love,
Bob and Mo

Tuesday, April 04, 2006

Day 7

Dear everyone,

Wow, I can hardly believe we are on day 7 already. Bob did, in fact start the chemo last night and so far, so good. He has what he tells me is "steroid euphoria" today. They premedicate the patients with zofran and decadron to prevent nausea and vomiting from the chemo, and Bob says 20mg of decadron is = 100mg of prednisone or 500mg of cortisone. So the bottom line is he is having ZERO knee pain today, and feeling pretty happy too. Steroids supposedly are a mood elevator also. He was up to 6 laps at a shot today, and moving faster than I've seen him in 5 yrs or so. He is eating everything they send him, and says "it's institution food.....whaddya' expect. He was eating an egg salad sandwich when I spoke to him at dinner time, after his celery soup and carrot-raisin salad. To all of which I would say "Blecchh" and be down in the gift shop w/ Deb buying chips and a coke. Here, all these years I thought Bob was such a gourmet, and took it as quite a compliment when he cleaned his plate when I cooked. Now I come to find out....the man will eat anything. Just kidding, I always knew Bob would eat anything.

We had a very busy visit today. We met the pastoral care minister, a very compassionate, friendly woman named Kava. We spent over an hour talking to her(or I should say occasionally, Bob, in his euphoric state, would let Kava and I get a word in edgewise). I get the feeling that she will be a wonderful resource for us. She is very easy to talk to, and listened intently to what we said. And I loved her b/c before she left, she told Bob he was a fascinating, caring man. I felt like she really got a sense of the wonderful person he is, which as nice as your drs. and nurses can be, until they actually sit down and converse with you, they don't really know you. It was also enlightening for me, b/c Bob told her stories from his Air Force days which I had never heard. So you must cut me a little slack, at this time in our lives, to crow about Bob, as he is one in a million, and I am one lucky girl to have snagged him.

We also met with our social worker, Tricia, who I also feel will be a great resource person for us. She is already looking into a few things for us, so we'll hear from her again soon.

On a medical level, Bobs' wbc's(white blood cells) were 1.9 today, hgb(hemoglobin) was 9.2 and his platelets were 61(thousand). That is a low WBC, but what the staff is concerned with as far as fighting infection is the absolute neutrophil count or ANC, and Bobs was over 1000 which is good. To fight infection it should be at least 500. Maybe that is why the open wound in his mouth looks so good today. I can barely see it compared to 2 days ago. All his mds were impressed by that today, and are glad they decided to go ahead w/ the chemo. So full steam ahead.

Bob is really looking forward tomorrow to his son Matthews' visit. Matt is a tekkie to the nth degree, and is bringing Bob a portable dvd player fully loaded with all the games these guys like to play. He lives in Memphis, and we haven't seen Matt since Sept., so it will be a wonderful gift for Bob, and I know it's really going to raise his spirits.

That's all the news that's fit to print today. We thank everyone for their blogs, cards, calls and support. You all are great, and we really appreciate it.

All our love,
Bob and Mo

PS, I have to clarify that Bob is not shaving his mustache off. I just meant in case it falls out from the chemo, that I had never seen him w/o it.

Monday, April 03, 2006

Day 6

Dear friends and family,

Bob will be starting his chemotherapy tonight( we hope...or as Bob says, I'll believe it when I see it). All his doctors conferred, and we met with our hem/onc Dr. Luger and the attending hem/onc Dr. Maillard and they are all in agreement that the chemo should be started. The ID dr. and the oral surgeons do not feel that there is a great degree of infection in the gum at this point. Bob has been on ABX, and he has not had any fevers. They will closely monitor the site, and of course keep close tabs for other signs of infection. But at this point, they feel the need to treat the AML is the major priority. Also, at this time, since many of Bobs' white cells are abnormal, the drs. think Bob will respond to the ABX and heal better once the chemo starts attacking the leukemic cells. Soooo, the chemo is ordered, the consents are signed, and we are waiting. Bob was going to call me when it was started. They usually give the chemo at night, since the day shift is busier. There are 2 drugs....daunorubicin(mispelled I'm sure) is an IV push drug given once a day for 3 days. Cytaraben is a continuous IV infusion that will run 24/7 for one week. I will of course keep you updated on his response to these drugs, or poisons as Bob refers to them. He just has a way of cutting right to the heart of things doesn't he?

He continues to be in fine spirits, teasing all the young interns and fellows. Hasn't quizzed anyone that I know of, but he did ask the GI dr. if he'd done many endoscopies before Bobs'. He has had only high praise for the medical and nursing care so far. He even corrected me on the need for an endoscopy, saying they had to do it even though there was a suspicion it would be normal. We met a woman today named Marty McCartney(don't know if she's related to Paul), who is the director of guest relations. Unfortunately we didn't get much further than introductions when we were interrupted by a dr.'s visit. Hope to see her again.

Bobs' appetite remains in excellent condition, and he's not having any trouble with the HUP food so far, except getting it that is. The computer continues to list Bob as fasting, and all the nurses are very perplexed about it. However his lunch and dinner trays were delivered today, so p'raps that problem has finally been remedied. The lap nazi would be proud of Bob today. he's up to 4-5 laps at a go, and they are not "Debbie laps" he says. He plans on doing the requisite 17 per day which will equal one mile. And trust me when I say that is more exercise than he has been getting each day at home. I gave Bob a haircut today (I hear that snickering from you guys). I have been using an electric shaver for several years now....not quite sure on why we ever started that. Anyway, he also has to use an electric razor on his face now. So he looked real purdy today. We are not certain how much of Bobs' hair will fall out from the chemo, but he says he already looks like he's been a regular on this floor, so what will it matter. But I have to say that I have never seen Bob sans mustache. He has never shaved it off in over 20 years. He tells me there's a mole under it on the left. I'm getting a little frightened, to tell you the truth.

Okay, so that's the scoop for today. Sorry I've been posting so late, but I have been staying at the hospital later than I anticipated. Again, thank you to everyone for the calls, cards, e-mails and blogs. I'm sorry I haven't been able to return all the phone calls. Please know I truly appreciate your concern for my welfare, as well as Bobs'. Please keep us in your prayers, especially now, that Bob will have an uneventful course on the chemo.

All our love and thanks,
Bob and Mo

Sunday, April 02, 2006

Day 5

Hi all,

This will be short and sweet. Bob had another uneventful day. Spent the better part of the afternoon visiting w/ the "in-laws", my parents, brother Tom, sister-in-law Anna, and nieces Meg and Kate. He had his 3 squares again, although supper time was looking a little dodgy when the kitchen aid bypassed Bobs' room. For some reason the HUP computer insists on listing Bob as NPO(nothing by mouth), despite 4 different nurses changing it repeatedly. His nurse today, Colleen, quickly snagged a tray for him and grumbling was averted, in more ways than one. Today we all shared in the 2nd b-day cake...Italian rum, which turned out to be the favorite. Bob did more laps around the nurses station and is up to 3 at a time now. He seems to be getting more comfortable with the place and more of the staff. The nurses, aides, and techs are all as friendly and sweet as can be. I still haven't met the ID md., but all the other attendings, residents and interns we have met since Wed. seem extremely knowledgeable, forthright, and compassionate.

I am planning on an early arrival tomorrow so we can "confer" w/ the docs. as they come to a decision about the chemotherapy. And if the oral surgeons decide Bob needs any further treatment of his gum problem, he is hoping it will be done tomorrow afternoon. I will of course be back tomorrow..."same bat time, same bat channel". Does anybody remember that? I'm dating myself I think.

Bob wanted to thank everyone for all the birthday wishes, and sends his love to all, as do I. Keep us in your prayers.

Love,
Mo

Saturday, April 01, 2006

Birthday Blog

Considering where we spent it, Bobs' birthday turned out to be very nice indeed. Meg and I got down early afternoon,(after a 100 minute ride on the Schuylkil). We decided to take along the pound cake and cannolis today, and Bob took your advice Kim, and tasted both. We gave half of the cake to the nurses, and he still has cannolis in the frig. Bob had a relaxing day...the poor guy desrved it after the week he's had. Worked on some crosswords and sudokus. Had a nice visit with his sister Santa and her husband Sam. (I hope Santa won't mind but I've had more than one person ask me about her name. It is pronounced Sahn-ta, and of course is Italian for saint, and if you ever met Sam you'd know how appropriate that is. JK, Sam. Her full name, btw, is Santa Clara,and I'm sure she is cringing while reading this, and now fully embarrassed). So, back to Bob...We even managed to get him to do some laps today....only 2 though, and than he complained of knee pain. He ate well today...finally had all 3 meals in one day!!!! Meg and I grabbed some dinner in the cafeteria, and didn't find it too bad at all.

We don't know too much more today about the chemo situation. An infectious disease md was in to see Bob today, but no one is committing to a decision yet, b/c the CT scan wasn't yet read by a radiologist. There is a conference planned for Mon. morning w/ ID, the oral surgeons and hem/onc. and us. But he's been on IV abx. and has not had any fevers. When I left this evening he was just getting ready to nap. So like I said, a pretty good b-day for our guy.

Please keep the good thoughts and well-wishes coming. And as always, please remember us in your prayers. Thank you for the blogs and e-mails, and b-day wishes. I wish I could respond to each individually, but I know you understand that's just not feasible. Oh, I do have to shout out however to all Bobs' compadres at Tri-Valley. I took the biggest bunch of cards to Bob. I think everyone who works there sent one or more cards, and Bob just loved them. He actually reads them, you know, and was very touched by it. He'd show a card to Meg, and tell her about the person who sent it. I think it really went a long way to cheer him up, so thank you all so much.

We send our love and thanks to all,
Bob and Mo

Day 3___Posted on the morning of day 4

Dear friends and family, co-workers and patients,

I wanted to clarify that this blog site is open to anyone who wants to send Bob a message. This, of course, includes all the wonderful people he works with at the office, but his patients as well. I specifically asked Bobs' partners to share this site with you. Bob cares very deeply about his patients.And I know, from all the get-well messages, he has received over the past 2 1/2 years how much you all care for him. He would be thrilled to hear from you. Provided of course, you are not requesting medical advice. So please feel free to write a note, and pass this site on.

Now, I will apologize for not posting last night. My niece Meg and I went to a friends' house to share a pizza and cheesesteaks, and the night went a little longer than I expected. That is why this post is titled day 3. So, here is what happened yesterday. Bob had to fast again after midnight Thursday, b/c someone decided he needed an upper endoscopy, since he never had one after his 2 episodes of GI bleeding in Feb. Never mind that our GI drs. knew it wasn't indicated...they had to see for themselves(are we sure it's not " HUP 2, 3, 4 " ). Guess what...the upper endo was normal!!! After a yummy fish lunch, we spent the entire afternoon at the dental clinic. The resident(another 12 yr. old girl) who took him down said I didn't have to go along b/c it was just for x-rays and she would bring him back....yeah, right. She doesn't know I'm already wise to the ways of " HUP World", as my friend Joe calls it. Three hours later, we arrived back on 7 Rhoads with the assistance of a transporter, the resident having effectively disappeared an hour before that. Now, some of you may already know that Bob has had previous infections in his mouth. These have required extractions, gum and bone surgeries, and bridge implants. About 4 weeks prior to admission, Bob noticed his gums were sore and his mouth was dry. He went to see his endodontist who gave him special rinses etc. and told Bob he needed to see an oral surgeon. Well, than we found out Bob needed the Bone marrow bx. and we went to HUP for that. We told our hem/onc about Bobs' mouth at that time, and were told to put a hold on the oral surgeon. When we were given the diagnosis of leukemia, we again questioned our hematologist about Bobs' open sore in his mouth, and were told it was most likely from the leukemia and would go away after the first few days of chemo. My specific question on Wednesday morning was "is it okay for Bob to have chemotherapy with this gum sore", and we were given the same answer. Now after multiple x-rays, a CT scan of the jaw, probing Bobs' mouth to take tissue and bone samples, it seems there is the question of whether or not it is safe to give Bob chemotherapy with an open wound in his mouth. And this is probably osteomyelitis or osteonecrosis....bone infection with dying bone tissue, which may or may not be related to the leukemia. Mind you, I am not trying to place blame. I know things change in medicine when you're dealing with the human body. There will be a conferring today of the oral surgeons, infectious disease md.s and the hem/onc dr. on call. Bob was started on antibiotics(abx.) last night, and that may be the course of treatment for 2-4 weeks before the chemo may be started. That is what has to be decided today. Is the leukemia acute enough, that the risks of severe infection in Bobs' mouth outweigh the benefits of waiting until the infection is cleared up? The degree of infection in the bone will play a large factor in this decision, and that will be revealed on the CT scan( for which the poor guy missed dinner again b/c he had to fast for an 8pm scan w/ contrast). I can happily report that his birthday is off to a good start this morning. He had a huge breakfast of eggs, sausage, 2 bowls of cereal, a blueberry muffin(remember Deb eating those every am.) and juice. He requested an Inquirer and some home-brewed coffee, and since it's his birthday I guess we can manage to come through w/ that.


We are going to have lots of goodies to share w/ the staff, as Meg ordered a sour cream pound cake, an Italian rum cake and cannolis for her Uncle Bob, since she wasn't sure what he would feel like. This really frosted Deb T. who actually stamped her feet and said she wanted to get the cake. The woman never stops giving. Oh and I must also tell you that a patient/guest relations rep. visited yesterday and wanted to hear our whole sorry tale of admissions woe. She gave me a few free-parking passes and said she will definitely be looking into the whole fiasco, and get back to us.

Well, I better get rolling. Gotta get to the bakery, and brew some fresh coffee for my sweet April (nobodys')Fool. Bob enjoys reading the blogs, and sends along his thanks for everyones' prayers and get-well wishes. I will keep you posted. Please continue to remember us in your prayers.

All our love,
Bob and Mo

PS to Hatfield Girl, I always wear my seat belt, and I only do 70mph on the turnpike where the speed limit is 65mph. Believe me, I am very careful on the Schuylkil. Although, I must say I'm getting more and more used to it. Not that I'll ever love it!