Checking in

Hello everyone,

Please forgive us(once again), for not writing in so long. We have been very busy. First of all we got to the shore for a long weekend, last Thursday to Monday. Our friends Deb and Joe generously offered us the use of their home in OC, NJ. It was wonderful. Bob couldn't go on the beach, but sat on their deck under an awning, read a lot, and also had his laptop for play. We ate out every night and visited all of our favorite restaurants. Only missed A la mode and a hot fudge sundae, but Lord knows I can do w/o that. We watched some movies(you can skip Syriana and Cache, in my humble opinion), and just enjoyed the change in scenery.

We have both been going to PT 2x's a week. I get measured next Tuesday, but my therapist thinks my shoulders' improving in leaps and bounds. Have lots of exercises to do 2x/day now, and it takes about 45 mins to get thru them all once. Bob also has benefitted, although he still has problems with tightness and stiffening, he can almost lie flat, and can comfortably lay on one pillow. Bev,our therapist also got him to raise his cane so he walks taller, and some people have noticed this(hey km).

I also, finally, talked Bob into applying for a handicapped parking sign. He's always been loathe to do that, and for the most part, I'll still drop him off and park in a regular spot when I'm driving, but there are times when that's just not possible, plus he's still driving himself. And when his knee locks, which still happens a few x's a day, Bob literally cannot take a step w/o excruciating pain.

So, other than the orthopedic pains, Bob's feeling okay. His counts have been stable, and they're still done twice a week. Oh he was having a reaction to the dressing on the PICC line. Tried 3 different ones and he finally seems to be tolerating this last one, but he has terrible raised, red areas under the dressing...Bob says they're first degree burns....and a generalized rash along his arms. So, other than the neck pain, knee pain, rashes and itching, Bob is great...sigh.
Seriously though, the poor guy really tries to make the best of it. We also found out this week that Bobs brother Bill is not a match for stem cells, so Bobs info has been put into the national bone marrow registry(aside to Anne Mazzola, I'm not sure how you go about signing up for that. They probably have a website, but I can call Dr.Ls office and find out for you). Which means that Bob will probably not be going in for his stem cell transplant until Oct. or Nov. While we're on the sct subject I just wanted to tell you that our friend Deb is doing well. She's hit a rough patch, having pneumonia and was in ICU for 3 days, but is back on the floor now. It was 2 weeks yesterday that she had her sct. Please remember her in your prayers. We certainly are great believers in the power of prayer, as we have witnessed it firsthand w/ Deb and Bob.

And speaking of prayer segues into our next bit of news...something we hadn't planned on publishing, but it's brought such peace and joy to us both, and you all have been so supportive thru our down times, I thought it would be nice to share some happy news. As many of you know, 15 years ago, Bob and I were married by his brother Bill, who is a Judge. On Monday Sept. 4th we are going to receive the Sacrament of marriage at Corpus Christi Church. It will just be a small cermony w/ our immediate families attending, and than a little luncheon at the Wm.Penn afterwards. So this has kept us busy over the past few weeks also.

I also wanted to tell BKH that we had a wonderful time at her party, and thank Bev for putting it all together.Bob really enjoyed himself and kept remarking how great it was to see everyone. Also wanted to thank J&C for the pizza dinner...that was a lovely night. How was the B-17? Sorry we missed it. Aniko, thank you again for a wonderful dinner...I have to tell everyone, that Aniko brings soup to nuts when she drops off her famous Hungarian dishes. I can also strongly recommend the chocolate ganache cake from Trader Joes. Thanks also to my cousin Nancy for the photos. They came out great, and thank your Dad too.

Well, that's all for now. Hope you're all enjoying these last days of summer. Wish this darn humidity would abate. Take care everyone. As always please keep us in your prayers.

All our love,
Bob and Mo

dear friends: thank you for your comments. i want to thank aniko somkuti for a delicious goulash.mo and i enjoyed it; we froze some and we will have it again next week. love bob

matt and rhane were here friday night and saturday. we compressed a lot of love and activity in a short period of time. the hugs were great,but thebest i remember was lying in bed and listening to rhane and kate talkikng and squeeling instead of sleeping; and mo and matt telling them to go to sleep. mo and grandbob had a good time. next year we will plan better and i hope this illness will allow me more time. bob

thank you deb, linda,kmclay, bev, kim, eileen, mdf,and coz. today aniko sumkuti brought overa hungarian goulash which mo and i will enjoy. my counts are holding and i feel good. both mo and i are going to therapy--now were both sore. no news concerning the hla results. thank you again, bob

we had our meeting with the dr. santa is not a match. bill's hla tests are not available as of this date. if bill is a match, then i could be in the hospital in 6 to 8 weeks. if he is not a match then it could be 3 to 4 months. so that is the time line. my counts are holding, and i feel good. no change in treatment. next visit is in sept. i have graduated to 6 t0 8 weeks. back to my physical therapy. we saw debbie today and despite her continuous fever she looked good. a sun tan can hide a lot of illness. love bob

my computer is wireless only at home. right now that is good enough. tomorrow,we hope to findout more about the ministemcell transplant. thank you all for all your prayers and good wishes. bob

Just catching up

Hi everyone,

Thought Id catch you all up, though there's really not too much to report. We've been busy, mostly w/ routine errands and chores. Bob has started his physical therapy for his neck. He's had one visit so far, but felt like the therapist already gave him some increased movement in his neck. He has exercises to do at home also, and of course in keeping w/ being the model pt.,(you may read some sarcasm in there if you like) he has been faithfully complying. He's scheduled for 3 more sessions so far. I too have finally gotten myself into gear and go next Tuesday for my first appt. for my shoulder. So we will be having couples PT, just like Jessie blogged about last week. Unfortunately, I don't think it's going to involve massages. But if it makes us more mobile that will be something.

Bob's also been busy setting up his new laptop. He got a beautiful new Dell laptop and is in the process of getting it all set up w/ his games, programs etc., so it will be fully loaded and ready to go to HUP w/ him for the next hospitalization. There's a broadband card that makes it wireless, so he will also have internet access and will be able to do e-mail and IM. So that will surely help as it promises to be another long stay.

No word on when that will be yet. We are going to see Dr. L tomorrow and hope to have more info to share after that. We are still waiting to hear on the sibs' HLA testing which takes weeks apparently. So we will let you know whenever we hear something.

As I wrote the last time, we are getting out more and trying to catch up w/ friends. So I want to thank Dawn and Charlie for the lovely dinner and wonderful company Sat. at the Mainland(just can't beat their sauces or creme brulee). Also to Lee and Yvonne for the swim(not Bob) and fun time at games night. Playing Mex. train by kerosene lamplight added a whole new dimension to the game. If you live in N. Wales you'll understand as you were probably w/o power also.
Another thank you to Jesse and Joan for the sweetest Silver Queen ever. It was delicious and we ate it all up. We appreciate your thinking of us, not to mention dropping it off.

Nice to hear from Kim again(truly, and I'm sorry you were under the weather on your vacation). I always worry that you're plagued w/ your migraines when we don't hear from you. Hi to Joyce and Jerry, and thanks for the post card and words about the old homestead.

It's nice to hear from everybody...Kris, how's the house- building going in NM?...KM, that was us who beeped the other day when you were in the Mill parking lot. And don't listen to your kids...your writing style is perfect just the way it is...SJS, you just make me laugh out loud. Love that biting wit of yours...to all Bobs patients who write and let us know you're thinking of him, he sends a big Hi and thank you...and last, but certainly not least, a very big HI to our gal Deb, who was admitted to Penn yesterday for her stem-cell transplant. Hang in there Deb, we're always thinking of you and keeping you in our prayers as your journey continues. We'll see you tomorrow.

Well I'd better get up and down to the laundry. Thanks again to everyone for all the cards, blogs, calls and well-wishes we are so privileged to receive each day. As always, I ask that you continue to keep us in your prayers, as well as Debbie who is, as usual blazing the trail for Bob. Hope you all are staying cool and enjoy the rest of the Summer.

All our love,
Bob and Mo