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, March 23, 2008

Easter Greetings

Happy Easter Everyone,

I hope everyone's enjoying this beautiful day w/ family and friends. We're looking forward to spending the afternoon w/ Bobs' sister Santa and family. We had hoped to have my parents down for the holiday, but my brother, niece Kate and sister-in-law Anna have all been hit w/ a GI bug that we didn't want to pick up. I'm scheduled to go to Scranton this coming Thursday to take my parents to different MD appts. and hope to bring them down after that. At least I hope I can get to Scranton. Bob is still experiencing the GVHD rash, in fact it is worse and has been accompanied by great fatigue. Dr. Luger wants to put Bob on an intravenous immunosuppressant treatment. He'll need two doses the first week and then it's weekly thereafter....and of course it has to be given at HUP. We had hoped to get the first dose in this past Friday, but of course, the drug wasn't available. So that pushes us to 2 doses this week, and I'm worried that the second dose is going to have to be given on Thursday when I should be in Scranton....we shall see. That seems to be the way our life is going these days....as Bob says 3 steps forward, 2 steps back. But I suppose that leaves us at least one step ahead???

We have been crazy busy....hence the delay in the post. I haven't even checked my e-mail in a week. In fact let me take the chance to say thank you to anyone who's reading this, that may have sent Congratulation wishes on the birth of Matthew. I hope to get to the e-mail after writing this.
The past 2 weeks, besides several trips to HUP(for Bobs eyes and to see Dr.Luger) we have also been, as Bob says "performing our due diligence". We have been to Pipersville, Blooming Glen, Hatboro(x2, since we didn't know that Gamburgs furniture store is "traditionally" closed on Wednesdays)Skippack and Montgomeryville.....all in search of invoices for the furniture that was either destroyed or being restored. The cost of restoration is running in the thousands, and we need to prove that it would be a greater cost to replace most of our pieces. If in fact they can be replaced at all. Did you know most furniture stores don't sell solid wood bedroom suits anymore? We sure didn't. We had a solid cherry set which is next to impossible to find....at least locally. I haven't searched online yet. But the woman we spoke to at Gamburgs said all the sets are now veneers.....cheaper of course, but if damaged in a fire, would not be restorable. So, hold onto that solid wood furniture. We're also working on our clothing inventory...10 pages of clothes and linens that were destroyed or unable to be cleaned. Now, how many of you remember when you bought your clothes and how much they cost....when you can't even see them. All you have is a piece of paper that lists what type...skirt, shirt etc. and the number of pieces....no identifying info at all, and we're supposed to date everything and list the cost and replacement value. This is so frustrating to me. Our adjuster just says...do your best. I sit at the table and try to picture my closet in my mind...and basically get nowhere. I'm lucky I can remember my name these days, let alone all this other baloney. And then there's always the fun stuff that comes up, like my glasses broke and I don't have a backup pair anymore, so there's 3 days spent trying to get them repaired(they were beyond help), getting an eye exam(thank you Dr. TJO for taking me in so swiftly...there are perks working at an opthamology practice) and picking out frames etc.
We were also busy this week in a new and pleasant way, as Meg and Matthew Thomas spent a few days w/ us. Well, I guess Grand Uncle Bob wasn't any busier than usual, but I was thrilled to be changing diapers and rocking Matthew to sleep. He is such a sweetie, and despite his Uncles opinion that all babies are cute, I must say he is very beautiful. And such a peanut, still less than 8#'s. The first night he slept from 11p til 5a, but the 2nd night he was up every 2 hours(not that Bob or I heard him). So he's not quite got a good sleep pattern yet. Hopefully, soon. But he is healthy, and that of course is everything.

I should also tell you that Bobs eyes are better. The opthamologist at HUP released Bob after his last visit, and his drops are finally done. Even w/ all my practice putting drops in at work, Bob was very difficult. He's one of those people who squeezes his eyes shut, so you have to pry them apart to get the drops in. Sheesh! He still needs to wash them w/ the J&J baby shampoo a few x's a day to keep the crud from coming back. But at least the itching and burning are gone. Now if we can get this new treatment started, hopefully the fatigue will get better.

Well, I just saw the time, so I better close. Oh, but I must mention March Madness before I go. Villanova just won their second round game...GO WILDCATS, and Georgetown(Bobs alma mater) is up by 8 as I write this....GO HOYAS. And to make matters even better Duke lost yesterday...HOORAH! Alas anonymous blogger(whom I suspect is Ms. A.M.), Marquette will not be in the final 4, but your other 3 predictions are still alive.

I also wanted to say hey to Jax and Connie and thanks for writing. It was great to hear from you. And another big thank you to May Day for her unfailing support, blogging and prayers. And to all who don't write, but continue to keep us in your thoughts and prayers, we thank you and hope you are blessed today and everyday w/ health, love and happiness.

All our love,
Bob and Mo

Sunday, March 02, 2008

Catching Up

Hi everyone,

Well, so much has been happening, and we have been so busy...where to start? I guess I'll tell you our sad news first, that Bobs Aunt Millie passed away last week. She had a devastating heart attack on Ash Wednesday that she never recovered from. She was, as her daughter Candy says, a force to be reckoned with, but an oh so loving and proud Mother, Nona and Aunt. We will all miss her terribly, but she left a wonderful legacy of love for her family. But as they say, nature abhors a vacuum, and though Aunt Millie truly is leaving a huge space to be filled, my niece Megan gave birth to a beautiful baby boy, Matthew Thomas, on 2/29 at 4:09 am. Yes we have a "leapling", in fact the first of the day at Doylestown Hospital, so Mom, Dad Matt, and little Matthew made the front page of the Doylestown Intelligencer Newspaper. Weighing in at 7lbs., 20zs., and 21 inches long, w/ a little brown down, he is the sweetest little bundle of joy. Despite having to be induced b/c her BP was high Meg had a relatively easy time of it. And she and Matthew are both doing fine, although today his bilirubin was high, so he actually is having to stay an extra day to be under the bili-light. Now we just have to arrange for Matthew to meet his Great Nana and Pop-Pop Noon. My Mother is, needless to say awfully disappointed that she can't be here to have him in her clutches...but hopefully soon. My parents are faring pretty well lately. My Father had his EPS studies, but did not need a pacemaker. He tolerated the procedure very well, in fact all the staff kept saying...you're 90 years old??? And he only needed to stay overnight b/c the procedure was done so late in the day. So that was a relief all the way around.

Now, onto the big guy. Or maybe I should say my shrinking guy. Bob's appetite has been waxing and waning lately and he lost 2 lbs. at his last visit to HUP. He also hasn't been able to shake the dregs of his cold, still needing meds regularly for the congestion and cough. And last Sunday I noticed that his "sunburn type" rash was back, and he noticed that his eyes were burning and tearing. So Dr. Luger prescribed some drops and cream, but both were worse by Thursday, so Lee Arano took Bob down to HUP on Friday, for which he deserves a medal or at the least a case of beer, as they were there ALL DAY!!!!! Dr. Luger sent Bob to the opthamology clinic, where he had a very thorough, 3 hour long eye exam. Bob thought he had conjunctivitis, but as it turns out he has blepharitis, which is an inflammation of the inner eyelids. So now he's on antibiotic eye drops, and needs to wash his eyes 4 x's a day w/ Johnson Baby shampoo. They seem a bit better as of today, but he still has a lot of tearing and burning, and is in general, not a happy camper. He also has had his one immunosuppresant drug doubled as the rash that's back is caused by the GVHD(graft vs. host disease). We head back down on Tuesday for a follow-up.

We've also been very busy with "the fire" business. Still filling out inventories of things that were lost and working on getting invoices from the furniture companies where we bought much of our furniture. Many of you know we had a beautiful, custom made, tiger maple dining room table and hutch, and windsor chairs. The furniture restorer we met with this past week is confident he can restore those to like new, all but the 2 armchairs. But all our upholstered furniture, entertainment center, kitchen hutch and a corner cupboard were destroyed. So we have already been to Pa. Traditions in Skippack and will be going to Pipers Classics and Roger Wright this week. I've also been working on replacing my collection of Vaillancourt chalkware Santas----these are American folk art pieces made in Massachusetts, many of which were part of their Starlight series that are only made for one year, so difficult to find and expensive when you do. And here I must thank my gal Deb T. who actually called Vaillancourt to order me a repacement, and ended up having a long conversation about her poor friend who lost her Santas in a fire.....so typically Debbie, making friends so easily and constantly worrying about others. I should tell you also that Deb, though fighting sinusitis right now continues with her outpt. chemo at home monthly, and her counts are currently off the charts....that is to say...normal!!! She remains, as ever, a huge inspiration.

Well, I think I hit the highlights. As I say, we are staying very busy. And I think I will be busier still with that new baby boy. Did I say how beautiful he is??? Oh, I did? Well I can't help it. When I get someone to e-mail me some digital photos, I will try to post them and you can see for yourselves. I will enclose the web address for the newspaper article that you can cut and paste, but unfortunately the photo isn't included online. So now you are caught up and I am going to hit the hay as it's after midnight. I've been writing in between watching TV, though I was disappointed that Masterpiece Theatre's Jane Austen wasn't on tonight. Bob and I have really been looking forward to Sunday nights since it's been showing.

Everyone take care. We hope you are all well. And you know, I'd love it if you'd blog to us. I miss the chit-chat like there used to be. And as always, thank you for your prayers.

All our love,

Bob and Mo