GOOD NEWS !!!!!!!

Dear friends and family,

At long last we have wonderful news to share. Dr. Luger called yesterday afternoon and told Bob to stop the targettrin...she said he wasn't a candidate for the clinical trial any longer b/c he is not considered a chemotherapy failure anymore. He said HUH? Than she dropped the bomb....on the bone marrow of 5/30, there were no blasts(read leukemia cells) seen at all!!!!!! So he is considered a delayed remission....following in our Debs' footsteps once again. Bob was so dumbfounded he actually used profanity and said "what the hell does this mean? She said for now it means we do nothing, see what Mondays' BMB shows and go from there. She was very pleased though, and we are being cautiously optimistic. As many of you know, there is no cure for AML w/o a stem cell or bone marrow transplant, and we don't think Bob is a candidate for that. We wonder if she will want to do consolidation chemo though. We have many questions now that we have our wits about us, and Bob has an appt. to see her on 7/11. We don't think she'll do another BMB at that time, as she had planned, but we'll hopefully get answers to all our questions at that point. At any rate, we never hoped to get these results(well, in my heart I've always hoped for exactly this, but never truly expected it.) and plan to bask in it for now. We're also not sure what Bobs' counts will do now that he is off the targettrin, but Dr. Luger did say if they fall, she can put him back on it, just not in the study. So, last night we went to the Mainland Inn...still our favorite local restaurant....each had a cosmo(not as good as JT's though-he still makes the meanest one around)and a glass of wine, Bob had the vichysoisse and veal chop, I had the escargot and Coquilles St. Jacques(that really taxed my high school French) and Bob finished up w/ the creme brulee....alright I had 2 bites if you have to know. It was fabulous and felt so normal...a very nice change.
Well, I'd like to stay and chat, but I need to get myself in gear to go out and run some errands. I just wanted to let you all in on our exciting news, thank you for your tireless support....prayers, well-wishes, cards and blogs....and as always request that you continue, as something is definitely helping Bob in this big "adventure".

All our love,
Bob and Mo

P.S. KM, is that line from one of the Jaws movies....I hate to admit it, but that's all I could come up with.

HUP Visit

Hi everybody,

Sorry for the long interval between blogs, but so much has been happening. First I'll start w/ Bob, who is doing really well. He had a BMB at HUP yesterday, and the procedure itself went fine...a small hematoma and a little soreness today, but that's not bad. The complete results are still not back from 3 weeks ago, and Bob is scheduled for a repeat in 2 weeks, so who knows when we'll hear anything about yesterdays'. However, Dr Luger did tell us that Bobs' blood smear from the last BMB showed no blasts, and she said she suspects that there are none in the marrow either. I'm not altogether sure what that means, but we have no percentages of any type of cells yet, so I won't speculate, other than to say I think that's good news. She's also pleased w/ Bobs' counts....his platelets were 47,000 and the hgb was 10.2 yesterday, which are both fabulous, so she thinks the targettrin is working. His wbc's were 2.6 which is a tad higher than the last one, and we don't have an ANC, but he has no fevers and continues the abx's every day. He still has the mouth wound, but it is clean and pink. There hasn't been a repeat triglyceride since the last blog. That will be done this Thursday I think, along w/ a slew of other labs for the study. His appetite remains very healthy, but i'm trying to cook more chicken and fish(speaking of which, Aniko and George, we had the last batch of chicken paprikash on Sunday, and i think it was better the second time around. Thank you again, and your bowls and containers are all set aside for you whenever you need/want them. I'd be happy to take them to you...let us know). Oh, what the aitch? As long as I'm talking about food already, I want to thank Santa and Candy and Aunt Millie for all the fabulous salads, bread, wine, biscotti, braciole(sp?) you brought last Friday. I'm not doing justice to exactly how fabulous it all was. Let me just say that we feasted all weekend and still have food left over, plus Bob froze the braciole( Debbie, eat your heart out....actually you can join us cuz there's 4 of them, and they are BIG), so we still have that to look forward to.

I still have so much to tell you, but I've lost track of time, and need to get dinner on the table, so I'll say bye for now, and try to finish later tonight.

All our love,
Bob and Mo

Uneventful visit

Hi all,

Sorry for the lateness of this post....my hubby assured me he was going to blog everyone today after we got home. He must've been playing his game instead, when he was up here earlier....my big kid! So, we met with Dr.Luger today. She told us she expects there is a delay w/ the BMB, b/c the lab is having trouble identifying the different immature cells and are using stains to make the ID, which takes longer.....obviously! She also decided that the BMB that was going to be done today should be done after the 2 week mark of Bobs' taking the new med, so we have to go back on Monday for that. The good news is that she thinks the targettrin is working. Bobs' hgb yesterday was 9.8 and his platelets were 38,000....both of which are very stable. His wbc was only 2.1 w/ ANC 380, and she wasn't very unhappy w/ that. She said Bob can go out, but just to use some common sense....no salad bars, only restaurants that we know and trust, no peak hour movies, etc., and of course no contact w/ anyone we know to be ill. So overall, not a bad visit.

Bob's been feeling pretty good. He didn't go out at all last week b/c of the wbc, but got some deck time before it got too hot. His neck problem is mostly gone, but the knee is still acting up a few times a day. It's so darn unpredictable, and so very painful now when it occurs. I wish there was something to be done, but Bob said only an invasive arthroscopy might help, and that is out of the question right now with his counts. Bob has had a vociferous appetite lately, and told Dr. Luger he suspects it's the targettrin.........she said that was the first time she ever heard that!!!! Also his triglycerides are almost off the charts...they were over 800 yesterday. 2 weeks ago they were under 200, and his cholesterol jumped from 180 to 240. These were all known side effects of the new med, and she didn't seem too terribly concerned. Bob's just got to take a larger dose of lipitor now....I think he's up to over 25 pills a day at this point. I swear I'd lose track of them all if I had to take them.

Well, I'm going to close here, as it's late and it's been a long day. Wanted to say hi to Bonstance, you've been on my mind. Hope you're laying low and taking it easy. Thanks for the cards, and who is Corrie Ten-boom? I feel as though I should know that name...is (he/she) an athlete? AANNDD, how does Kathi Moore know you??? I swear she really is the mayor of Lansdale(sorry Holly). Lastly, I just wanted to ask you all for extra prayers and intentions for our Debbie T who's going for a BMB at HUP tomorrow. Keep your pecker up, honey. I'm keeping positive thoughts in my head and channeling them to OZ.

Okay, that's really it. Love and thanks to everyone. Please keep us in your thoughts and prayers. We're so greatful for all your support.

All our love,
Bob and Mo

STILL NO RESULTS

No bone marrow results that is. And at this point Bob says he's not asking anymore, he'll just discuss it w/ Luger on Tuesday when he has a repeat BMB. I said yeah, if they actually have the results somewhere. I can tell you that his wbc's were 2.1 yesterday, and the neutrophils were 400. Higher, but not high enough to be off house arrest, as Deb calls it. The hgb and platelets are both stable, and he doesn't need any transfusions.

That's all she wrote for now. My parents and Kate are here,(don't worry, nobody has so much as a sniffle) and we're going to watch "Ladies in Lavendar" w/ Dame Judi and Dame Maggie. That is Judi Dench and Maggie Smith are in the movie, not in Kulpsville watching with us. Ha! As if you thought otherwise. Anyway, I kicked Kate off the computer so I could write this, and I must let her back on.

Did want to thank SJS for the kind words, and give my wholehearted concurrence. I'm not sure any of us realized when we were living it, just how rare and special and strong, all the friendships we forged would come to be. I too feel honored and blessed to be part of such an exceptional group. And I just want to tell Suzanne in case she's reading this, that if you need anything at all, please call. Bob also wanted to thank everyone for all the love and well-wishes you sent to him on Wed. night.

So, that's about it. Thanks for all the support and keep the prayers going please.

All our love,
Bob and Mo

Where, oh where has Bobs' bone marrow gone?

Remember that song? Where oh where has my little dog gone? Maybe I should call Dr.Lugers' office and threaten to sing it until we get the results. It is 2 weeks today...the longest we've ever gone w/o hearing anything, and it's starting to unnerve me. Bob spoke to a nurse yesterday and today and they just don't know where it is!!!! Does that mean it's lost?....I ask Bob. He says what am I asking him for???!!! He asked today if it could be taking so long since he is now a part of a clinical trial.....they don't know. VERY frustrating, on top of which Bobs' wbc's today are only 1.6 w/ ANC down to 256. So now, just when the neck pain is gone and his knee is acting up a lot less frequently....he can't leave the house. What does Charlie Brown say? Aaarrgghh! Maybe this isn't a good day to blog.Besides, I really have nothing else new to tell you guys. Maybe a few comments for the peanut gallery.....

Mary Day, I know you didn't mean to be funny when you said we should ask them why things take so long, but that gave me my biggest laugh of the day. I'm sure Deb got a chuckle over that too. I'll tell Bob to ask that tomorrow. I forgot to write that he asked for Dr. Luger to call tomorrow about the low wbc....again we'll see. Also MDF, make up your mind....I get comments when I don't write, and when I do you say I'm LENGTHY. Hmmph...what a nerve. And I didn't know you 30 years ago. I was still a sweet young thing of 17. You probably met my parents 24 years ago when I was 23 or so and you were......oh never mind. I should just e-mail you and rag on you there.
To my cousin Nancy, I'm sorry I missed Emily....wanted to wish her Bon Voyage. I did call last week on Monday and Tuesday evening, but it was busy, busy, busy. Everyone really enjoyed themselves at your house. I was jealous that I missed it. My Dad's coming along although he is having some rib pain. Anna was worried about it and took him to Grandview Hospital this am, where everything they did was negative...ct scan of his head and abdomen, CXR and a slew of labs. Long day for him, but at least we know he didn't break anything. Is Em near the World Cup? How long is she gonna be gone? I'll be in touch later this week. Hugs to Bruce and Sarah, and tell Em I hope she's having fun.
Debbie I read your blog and I'm praying my heart out here...Bob too. You hang in there dear. I'll give you a call tomorrow. Hope today wasn't too long. Hugs and kisses.
Eileen, while I am not formally striking, it seems that something crops up every other day or so, that just makes cooking dinner impossible. I am lucky that my husband thinks of bacon and eggs, and franks and beans as comfort food.
Well, I don't want to upset MDF's delicate sensibilities by writing too much longer(sorry Mare, if Kim joins us again I'll start dissing her). So I'll close and ask for your continued support. This has been a rough week so far, not just for us, but for some other friends as well. Please everyone, take care of yourselves too. We love you all and thank you for everything.

All our love,
Bob and Mo

PS....Bonnie, I'll give you a call tomorrow. Hope you're chillin'.

No news yet

Hi everybody,

Needless to say Bob got no call on Friday, so he will start the phoning all over again tomorrow. He continues to feel well, and though he had a bad day yesterday w/ his knee problem, it hasn't gone out on him today at all. So, one day at a time. He's still eating well, and in keeping with the true spirit of our blog I will tell you about the wonderful Hungarian dinner that Bobs' friend and pt. Aniko made for us. She dropped it off Fri am...sorry I missed you Aniko, Anyway she brought us chicken paprikash, spaetzle, cucumber salad and a rum dessert I do not know the name of....all homemade, and all enjoyed by us on Friday evening. Actually we still have a container of chicken frozen, and a 2nd dessert also, and 2 bottles of wine and real Hungarian paprika that Aniko just received. So Aniko thank you, thank you, thank you. Everything was delicious....you really outdid yourself, and we truly appreciate all your hard work.

It's been a hectic weekend for me. My parents are staying at my brothers' while he is traveling to the Czech Republic, and my Dad took a tumble on Toms front concrete stoop Friday am. He really got banged up, poor guy, and looks like he went the distance w/ Mike Tyson. I'm sure he's going to be the talk of their apartment building(they just moved on 6/2, and barely know anyone there yet) when they get home. So they've been w/ us since Friday, and my mother and I have also gone out shopping for linens and some new kitchen doodads, even though she says it's ridiculous to buy all this new stuff for her and my Dad at their ages(Mom-82, Dad-88). I should be so good when I'm 82...criminy!, I should be so good now. Between my shoulder, Bobs knee and neck, my Mothers' knees and my Fathers' feeling sore everywhere, our house looked like a pain clinic this morning. I want some warm weather!!!!

My niece Kate was over also on Friday and I wanted to thank her for helping Uncle Bob with the phone....she did some reaching and plugging for us under our bed that we haven't been able to get to. Also wanted to thank you bloggers that keep us smiling with your wit and levity....MDF, Eileen, KrisM, DebT, KM, Kim...whether intentional or not, you guys crack me up and it seems like it's always right at the exact moment that I need it. Kath, do you really not remember how to get to our house?? We're right down the street. Oh and I have to confess to Jax and Connie that I shamelessly stole the Lucy/Ricky thing from that paragon of wit, Kathi Moore. BTW, we don't have HBO anymore so I don't watch the Sopranos, and even when I did watch it, I only peeked thru my fingers. I don't do well with violence(gratuitous or otherwise).And Mary Day, PUHLEEZ, don't worry about using the blog for communicating with other bloggers....reach out and touch/blog whoever you like....that's what I always loved so much about Debs' blog, and I know she enjoyed it too. Actually, I think we need to have some serious cosmo party talk again. And MDF, you're out of school, so you HAVE to come!!! Also wanted to say to our fluffy buddy from MSC, hope you're feeling better, they've got a handle on your problem and you are already or will be soon out of GVH. Also, it was great talking to you today Charmaine...you look wonderful, and I'm so glad you're really liking ICON.

Once again, our thanks to everyone for your continued support. I'll try to be better about writing. It's funny how you start to slip back into your old patterns of daily living...only natural I guess. That is what we're striving for after all. And sometimes I feel like I'm writing the same-o, same-o each time, and who really wants to hear that. But I do love hearing from you all, so I will try to post more frequently. Please keep the prayers and good vibes going, especially for our dearest friend Deb T. who just heard on Friday that her chromosomes have reverted back to an abnormal pattern, and she is now facing a bone marrow transplant or mini-stem-cell tx from a donor...a much riskier procedure than the autologous sct(her own stem cells) she was hoping and shooting for. All our prayers and love are with you and Joe, Deb. And I will close right there, wishing everyone a good week ahead.

All our love,
Bob and Mo

PS, A great big dating game kiss to the newlyweds Sarah and Kenny. And mucho congratulations to Mom and Dad, Lorraine and Bob. So sorry that we couldn't celebrate with you all on the big day. Guess we won't be hearing from you guys for a while as your blogger is on her honeymoon. Hope everything came off smoothly yesterday. Let us know. Wanna hear all about it.

Still No Results

So, I swear I tried to post earlier and the blog was down for maintenance. But we still don't have the results of the bone marrow done over a week ago. Bob has talked to 3 or 4 different people, and finally today Dr. Lugers' secretary said she would have her call tomorrow....we'll see. I can however report that he's doing better. He even says he feels good when I ask....a definite improvement. Now if only the GD knee would stop locking...that is so painful when it occurs, and he literally can't take a step. It scares me to think he could fall.

Bobs' counts are really very stable(I am rapping the wooden desk I'm sitting at). His hgb was 10.1...platelets 40,000...wbc 2.8...all from this am. He also had a slew of other labs done, as he started the clinical trial med. today. The drug is supposed to increase his counts, so he'll need fewer transfusions. Now though he must take lipitor as the drug can also increase cholesterol and triglycerides. So he's been taking 11 pills every am, and now he's got to take 8 of these new capsules every day. Alas he must take them with food...a real hardship let me tell you. Bob has gained 10 lbs since he came home, and he really looks much better.

Well, you can see from the posted time that it is very late, and my bed is calling me, and my brain is fuzzy, so I'll close here. Thank you everyone for everything. Please keep sending your prayers to heaven and your good karma to Kulpsville. Oh, and could you all please add a dear friend and co-worker of ours to your prayer list? She is a sweetheart of a person and a wonderful nurse, who is in Grandview Hospital. And I'm not naming her as I actually didn't get her permission, but she is a great believer in the power of prayer, and I know she would appreciate it. Talk to you all soon as we hear anything.

All our love,
Bob and Mo

Just an update

Good morning,

First I want to apologize for not writing in so long. I did think Bob was going to write yesterday, but apparently he never got around to it. Thursdays' counts were all holding steady, so the last time he had a transfusion was 5/26. There's been no word on the BMB, and Bob will call on Monday to see what's what with that. The only major troubles for Bob are still orthopedic in nature....the neck strain and his knee locking are still a real pain....literally. He is off codeine, but is taking a muscle relaxant, which he than needs to take a very strong laxative for. But I'd have to say at least he's slept the last 2 nights, and that's something. My cold is much better...just a little cough left, but I've been on ABX's for 4 days now, so we do not have to Ricky and Lucy it anymore.

I'd like to write more and shout out to a few of you'all, but himself is waiting on the computer, to get online to a game he plays with Matt and Mandi. So I'll close here, thanking everyone for their tireless support, and asking for your prayers.

All our love,
Bob and Mo