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I’ve decided to walk in the Washington DC Susan G. Komon 3-Day race for the cure to help raise money to combat breast cancer. I’d be ever so grateful if you could find your way to donate on my behalf.
To help make it easy, you will notice I’ve added a new widget on the sidebar to the left of this post. It is a link to my fundraising page where you can easily donate whatever you can.
Thanks so much for your support.
It’s been a while since we’ve posted. I suppose in the long slog of normalcy the blogging has fallen to the wayside a bit. Strange in that even when there was so much going on when Claudette and Leighton were both sick I was able to find the time. I suppose this reinforces the fact that the blogging was as much for my own catharsis as it was to share information.
Not that there haven’t been developments, most of which are positive. First, Leighton. She continues to improve. Her speech and physical therapy are now down to just one visit a week. Her speech is now beyond where it was when she got sick, although she has almost a whole other year behind her, so hard to tell if she’s completely caught up. We’re continuing occupational therapy at a decent clip, mostly because her left hand and arm aren’t yet 100%. She also still has some balance issues, but nothing like what she had before. To help, we have added in both gymnastics and Gymboree classes to help give her both more physical activity and training, as well as get her back in the swing of socializing with other kids. She’s now been cleared for both summer camp and school, which is yet another positive step.
Claudette is also doing reasonably well. We had a bit of a scare in that we discovered a growth in her cervix lining and had to schedule a minor out-patient surgery to have it removed. We wrung our hands during a long weekend waiting for the results, but blissfully they came up negative. Apparently, the growth was caused by her hormone therapy, so we’re changing it again and are also going to schedule a procedure to oblate her cervix, which will remove that lining completely and permanently and hopefully avoid further issues. Beyond this, recovery is coming along nicely.
Thanks for your continued support. We’ll try to post more often going forward.
Since our big Thanksgiving trip to New York, we’ve been doing lots of fun and busy holiday stuff.
First was Brennan’s birthday on the 30th, followed immediately by Chanukah from December 1-9. Due mostly to extreme guilt over the rough year our kids had and all we put them through, we gave them just about everything they wanted (and a bunch of stuff they didn’t even know they wanted). Whatever we left out was capably filled by grandma, papa, aunts and uncles. Claudette and I splurged on each other some as well. We spent more than normal across the board, but we figured why not.
It was both joyful and sad flipping through our year in pictures to make our holiday card and reminded us that 2010 was really a year to forget. We countered this by making some really nice gift baskets for many of the people who did so much for us over the past year as a very small and insufficient way of saying thank you, and by doing a lot this holiday for the less fortunate.
I’ve been incredibly busy at work wrapping up 2010, planning for 2011, continuing work on the launch of our new Social EQ research, and doing a lot of traveling to support it all. I’ve missed a few major things, like several nights of Chanukah and the kids’ holiday concert, which is creating massive feelings of guilt, but it’s all things that have to get done, especially given that I missed nearly three months of work due to Leighton’s hospitalization. There have been some nice personal benefits to the work as well…this week we had our global senior management meeting, which gave me the opportunity to thank everyone at APCO in person for their support this year. I brought Claudette and the kids to the wrap up party last Saturday night so they could do the same, and to give the kids the experience of meeting people from China, India, Malaysia, Belgium, the UK, Russia, the UAE, France and about a dozen other places. It is always very energizing to connect with my colleagues around the world and remind myself of how incredible is the company my mother built.
Leighton continues to power through 5-6 therapy sessions a week and is working with a great network of talented, passionate and caring therapists. They tell us she is making slow and steady progress, although it’s harder to see than the dramatic gains she achieved early in the process while so much was coming back. Mostly, though, she’s happy (and super-talkative) all of the time. On the medical front, the big recent highlight was a return trip to Kennedy-Krieger for a follow-up visit. They also reported that she is doing well and they like what they see. Although most of the medicines are gone, she is still on Neurontin for nerve pain at night. We’ve tried a few times to wean her off, but each time we do that she wakes up throughout the night crying out in pain. We’ll see how long that ultimately lasts.
Now, with Chanukah behind us, our focus is all on our annual trip to Cancun, Mexico, which incredibly is now less than a week away. We’ll be posting photos and updates from there, so feel free to check in with us whenever the spirit grabs you.
On behalf of the Kraus family, I hope you have an incredible, fulfilling, healthy and wonderful holiday season, no matter which holiday you call your own. Thank you from the depths of our hearts for everything you all have done for us.
Claudette and I wanted to do something special for Thanksgiving because we’re just so very thankful to be where we are right now with regards to both Leighton and Claudette’s health. So we received a special joy when my cousin Eliot had a baby boy a week before the holiday. For us Jews, that meant a bris in Manhattan on Wednesday the 24th.
We decided to take the kids up early, leaving after my grandfather’s 91st birthday brunch on Sunday. We arrived at the Marriott Marquis right in the heart of Times Square at about 10:30 pm, which meant when we woke the sleeping children upon arrival, their first sight was all the lights and activity of Times Square and Broadway. I think they were amazed that a place like that could even exist.
We had an amazing week. We went shopping at the Disney store, Nintendo World, Dylan’s Candy Store (home of the largest lollypop in the world), Toys-R-Us (with its indoor ferris wheel) and others I’ve probably forgotten. Claudette took Brennan and Ainsley to the American Girl store for a lunch and shopping while I took David and Leighton to the Museum of Natural History. We went to Rockefeller Center, where Brennan ice skated and we took the whole crew to Top of the Rock. They rode in NY cabs, were pulled around by a bike taxi and did a lot of walking and gawking. We even ate dinner one night at the Starlight Diner, where the waiters and waitresses sing, and the older kids went with Claudette to see Mary Poppins on Broadway.
An amazing few days, topped off by a very special activity Wednesday night. We went to the site on the upper West Side where they blow up all the huge balloons for the Macy’s Thanksgiving Day parade and took a tour of the balloon floats as they were being filled. A very cool and somewhat surreal experience.
The bris was wonderful, and Eliot gave a speech that had most of the room in tears. We spent a nice Thanksgiving dinner at Aunt Mara’s house near Annapolis and, after all that, we were right on the doorstep of Brennan’s 8th birthday and Hanukah, which started last night.
Needless to say, I think the kids are very happy right now. Here are some photos to enjoy:
One of Brennan’s birthday presents was getting her ears pierced.
The kids were enthralled by the Magic Mirror at the Disney Store in Times Square
Ainsley and David enjoying Rockefeller Center
Look closely, and you can see Brennan skating at 30 Rock. She’s at the bottom center in pink with her arms extended (spinning).
Leighton and David loved the Museum of Natural History, especially the dinosaurs and butterfly preserve
The big girls having a special lunch at the American Girl store
Leighton and cousin Hannah, having a cuddle moment at the Starlight Diner
While the big kids and Claudette went to Mary Poppins, I walked back the 10 blocks with Leighton. Here she is having fun with a police horse. This interaction attracted a big crowd.
On Thursday, Claudette went back to see the oncologist for a check in. Pretty good news overall. The hormone therapy seems to be working without many side effects. Her markers are all in good ranges. The only real issue right now is the fight against osteoporosis. Claudette is taking a ton of calcium every day, but it still seems to be coming. In particular, a few vertebrae in her back seem to be weakening, which is causing some discomfort. This is going to be a fight we wage for a long time, I fear.
The kids are doing well, including Leighton. We’re all gearing up for Brennan’s birthday on the 30th and today we allowed her to get her ears pierced, so she’s thrilled. Hanukkah starts the day after, so they’re all getting very excited.
No school next week and my cousin Eliot just had a baby boy, so we’re heading up to the big city tomorrow afternoon and are going to stay through the new baby’s bris on Wednesday before driving back for Thanksgiving Thursday night. So should be a fun, event-filled and crazy week. Can’t wait.
Hope everyone is doing well and giving thanks for their family’s health and well-being. I know we are…
My sincere thanks to all of you for continuing to check in with us. The normal frenetic activity of home (like the six birthday parties we had last weekend), combined with my efforts to catch back up at work, have made it more difficult to write than I expected. But we’re getting your messages and I’m happy to keep everyone informed.
The pace of progress on all fronts has slowed down considerably, but continues forward. First, Leighton. She is doing incrementally better every day. She still has some balance issues, and some left hand issues, and bites her tongue occasionally when she eats, and has nights when she either experiences nerve pain, or bad dreams, that keep her awake. But this is all to be expected…the doctors told us it would take a year for her to recover fully. And everything seems to get better and better as the weeks roll by. She’s still thin and tiny, but is eating like a horse, so now it’s just because that’s the way she is more than the illness. She’s down to one medicine — Neurontin for nerve pain — but we’re even weaning her off that. Therapy continues 4-6 times per week; her therapists report continued progress from their perspective as well. So here’s the best thing…she’s happy. Very happy. Smiles all the time, laughs all the time, loves being home and with her siblings. It’s a little strange to write, because she’s two and can’t think in these terms, but it almost seems like she appreciates life more. Anyway, we’re just happy she’s home with us and happy.
Claudette is also doing better. Her hair is growing back (think Annie Lennox now instead of G.I. Jane). She’s getting stronger, less sore and less fatigued all the time. And most importantly, all tests and lab work are coming back in normal ranges…even the one with the early stage recurrence marker that gave us so much fear a month ago. Her perspective on diet, the cosmetics she uses and general health maintenance have changed forever, but these changes are ultimately for the better, I think. Being in menopause and not able to take estrogen to reduce its impacts is not the most wonderful thing in the world, but it sure beats dying from Cancer. The last major hurdle is getting her on the right hormone therapy for the next five years and then making sure the side effects aren’t significant. Then we wait and hope for no recurrence.
The other kids are doing great. Flint Hill is a wonderful school and they are all loving being there. Ainsley has a much more purposeful stride now that she’s a big JKer and all three of them love their teachers, are fitting in well with their fellow students, and are thriving academically. We are so very proud of them and how well they’ve handled everything we’ve thrown at them. Sure, there are the occasional sibling squabbles, but our house is generally a happy, respectful and supportive one. No complaints.
As for me, I’ve been working incredibly hard catching up at work. I re-engaged just in time for 2011 business planning, which for me this year includes an integration with our creative studio, securing new office space for the 35 people on my team and a host of other challenges. I’ve also taken on a role helping coordinate a new set of a half-dozen global practices, which is a new concept at APCO. And then recently, I’ve been dedicating avalanches of time launching a new piece of thought leadership research called Social EQ. We were able to secure a co-branding partnership with The Huffington Post, which was a major coup. The last few weeks I’ve been flying around the country briefing companies on the work and just yesterday we did a public launch. Phew. Looking forward to that December vacation in Cancun.
And of course, Hanukkah is coming up in early December. We have the kids covered, but if anyone out there has any good ideas for me for gifts for Claudette, please let me know. If they’re REALLY good, just e-mail me instead of posting a comment (which she’ll read). Or even better, throw her off the trail by posting one idea as a comment and e-mailing me the real one. Thanks.
Okay…sorry for not writing. What’s amazing is that while I was super-busy and sleep-deprived at the hospitals, what I’m experiencing now is a different kind of busy that has gotten in the way of writing. A fun busy. An attending Flint Hill School homecoming busy. A taking the kids to three birthday parties in one day busy. A re-engaging with my clients at work busy. A reading bed-time stories busy. A watching Kentucky upset South Carolina busy. A no time to post busy.
So here’s what’s going on with us. Leighton is continuing her slow, steady recovery. We had some real concerns earlier in the week because she wasn’t eating much at all and, with her weight below normal from her whole ordeal, she doesn’t have a lot of room to spare. This was caused by a combination of a little stomach bug, the fact that eating (and particularly chewing) is hard, and that her poor oral motor skills cause her to bite her tongue fairly frequently. So we changed our approach…instead of pushing lots of food at mealtimes, we just started feeding her all day long. Literally. We’re constantly shoving things in front of her to snack on. And it’s working. She’s digging into these tiny meals and her appetite has returned. Her weight is increasing, as is her energy level. Good stuff.
However, we still have one other problem. As you know if you’ve been reading, Leighton has fully-functional cognitive ability. In some areas, she’s ahead of her peers. But her motor skills are still equivalent to that of an 18-month old (she’s 2 1/2). So here’s the problem. She sees things she wants to do, knows how to do, and in some cases used to be able to do, and thinks “I’ll try that!!” But she can’t. So we’re having to watch her very, very closely…a tough job when you’re watching four of them. So if you see Leighton around Vienna these days, you’ll notice she has a scrape on her face. This was caused by a fall on the driveway, when she was just sitting there drawing with some sidewalk chalk. She lost her balance and BANG. These types of things are the challenge now.
So problem #2 is Claudette. She is recovering very nicely…maybe too nicely. Because she also needs to be watched closely. She’s not a fall risk like Leighton, she’s a work risk. In other words, if you take your eyes off of her, she’ll start to do laundry, or dishes, or cook, or maybe even give the car a tune up by hand. And watching her is not easy now that I’m back at work. I had all-day meetings on Wednesday and Thursday this week, and sure enough, I had to stay home on Friday because she had overdone it. And then, after a restful Friday, she did all the party-homecoming-kid stuff yesterday and then about ripped out her stitches when Kentucky intercepted that last Stephen Garcia pass to ice the win against South Carolina last night. So today will need to be another rest day. Of course, those of you who know Claudette will not be surprised by any of this. I suppose that I’m her Sisyphus and she’s my stone, so it’s just what will be.
Today will be a big week for us, as Leighton goes back to her neurologist for a check-up on Thursday. She’s just finished her course of Dylantin (anti-seizure meds), so we’re hopeful he says we’re done with the neurological risks forever. Cross your fingers. And on Thursday Claudette should be cleared to start driving again, and then in a couple more weeks, will be able to pick things (and children) up again. Then we can focus on the answer for the hormone therapy now that we know Tamoxifin will not work. Leighton is still doing 5-6 therapy sessions a week as well, which keeps us busy.
So things are increasingly back-to-normal, with these constant nagging reminders about what happened, and what could always come again. Thanks for being patient with our posting frequency. We’ll try to do better (and post some good pictures). ‘Till next time!!
Finally, I’m here sitting with Claudette. She’s sitting up, eating Graham crackers and drinking Ginger ale. She’s on Percoset and a local pain pump, so is feeling great. She had no issues coming off the anesthesia either, so amazingly, we’re allowed to go home.
She’s tired, of course, and will need pain meds for a few days, and will be out of commission for a couple weeks, but this is the best possible outcome. And no drains, so no wars over cleaning drain sites like last time. That said, I still have to give her sponge baths and injections for a week, so I’m sure we’ll have humorous stories to share.
The follow-up visit with Dr. Suh is next Tuesday, but I don’t expect any trouble.
Thanks all for your support and well-wishes today.
Apparently, “tinkering” equals extra pain, so Claudette is still in the more acute recovery area while they get her pain under control. So I still haven’t seen her. “Tinkering” also equals extra sutures, more soreness and a longer recovery time. All in the name of a better-looking outcome. So next time you see my dear wife, do me a favor and give her a compliment.
I suspect I’ll be able to see her sometime in the next half-hour or so and the plan is still for us to get discharged later this afternoon, so in the grand scheme of things we’re still basically on track. I’ll continue to keep you all posted…