A Picture Says a Thousand Words

While Michael is driven INSANE by people staring at him and Sylvie when out and about, my parents seem to get the red carpet treatment! Whether it's meeting all the ponies at Van Saun Park or getting some extra love in the Butterfly House at the Bronx Zoo, I think my parents might also need the extra TLC as the whole Hughes/Kahn clan gradually comes out of the 9-month cancer cocoon. One thing is for sure, anytime Grandma and Grandpa (and Granny Annie and Pop Pop) have a day with Sylvie, they make it extraordinary which, as Fancy Nancy says, is a Fancy word for extra special. Sylvie could not stop talking about the Brooklyn Aquarium and Bronx Zoo and wants to immediately go back and show us her favorite spots. We cannot wait to go! QUIZ: Which animal does not belong in the Zoo :-).

Blood & Platelet Donations for Haley

Greetings all,
Nadia from the HUMC blood donor center sent us a sweet note last week along with the little blue French notebook that so many of our friends and family took the time to write in. I read it whenever I was donating blood but there were so many entries that I had never seen. To say that we are grateful and weepy is an understatement. From the top and bottom of our hearts, thank you.
My dad has been a blood, platelet donor my entire life, so he and Nadia at the blood bank are now buddies. Blood bank low on platelets, call my dad and he'll be right over. It's one of the many things my dad does to truly show his incredible kindness.

On that note, I'm copying and pasting this personal note from Haley Tyrell, a 5th grader in our town, who was recently diagnosed with Osteosarcoma and is being treated at Sloane-Kettering in New York City. As you know, she will need blood and platelet transfusions. Information is listed below.

Haley Tyrell is a 5th grade student at Travell School Needs Blood & Platelets
Haley Tyrell is a 5th grade student at Travell School. She has been diagnosed with bone cancer and is currently receiving chemotherapy at Sloan- Kettering in NYC. She is in need of blood and platelets.

Haley’s Story
It started with some pain in my groin during the last week of August. Everyone thought I pulled a muscle, but when the pain didn't get better my mom called the pediatrician. They sent me to Valley Hospital for a couple of x-rays. The x-rays came back good but they told me to take it easy because I probably pulled a muscle in my groin and to follow up with my orthopedic. This was on Aug. 31st. It was a bummer because on the last day of summer I couldn't play with my friends. I started 5th grade on Sept. 2nd and that afternoon I went to the orthopedic who checked my leg, confirmed that the x-ray looked good and told me if I wasn't feeling 100% better in 2 weeks to come back. So, over Labor Day weekend my family and I were at my grandparents lake house in Inlet, NY (Adirondacks). On Saturday Sept. 5th I tripped and fell . My leg was in excruciating pain and I was unable to move. I was taken by ambulance to a hospital 85 miles away in Utica, NY. Every bump we hit along the way made me want to scream. X-rays were taken and showed that I broke my femur bone. I was then transferred by ambulance (4 1/2 hours) to West Chester Medical Center because I needed better care. When I got there on Sunday morning they immediately put my leg in traction. The next day I had a CAT scan and then off to surgery to have a plate put in my leg to fix my broken femur. During the operation they found a tumor in my bone and sent it out for a biopsy. In the meantime I was having other tests done(blood work, bone scans, MRI's, etc.) On the evening of Sept. 9th the doctors told my parents that the results of my biopsy weren't good. So, on Thursday, Sept. 10th I took another ambulance ride to Memorial Sloan-Kettering Cancer Center whereI had many more tests done. After the tests were completed Dr. Meyers and his team explained to us that I had a form of bone cancer called Osteosarcoma. The good news was that the other tests showed that the cancer was localized in my femur and had not spread to any other parts of my body. I start my treatment on Tuesday, Sept. 15th.

Love,
Haley


HALEY TYRELL Needs Blood & Platelets

Haley is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. Her treatment for Osteosarcoma requires regular blood and platelet transfusions.

Haley and her family would deeply appreciate your donation of blood and/or platelets and hopes you will ask others you know to donate. Donations not used by Haley will be released for use by other patients many of whom are children.

Designated donations for Haley Tyrell must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please CALL:
Joe Licata @ 212-639-8177
Manager, Blood Donor Program
licataj@mskcc.org
or
The Blood Donor Room – 212-639-7648

Appointments are necessary- All blood types are acceptable

Magic Hearing Buttons

Long day in the universe. After school, Sylvie went to gymnastics where every week she progresses immensely. Today she was jumping into a giant foam cube pit, climbing a ladder barefoot and jumping onto a very steep slide, walking a balance beam. Her instructor, Aly, is studying for her degree in occupational therapy and does a great job mixing different skill sets every week.

From there we headed over to HUMC. First stop was the Children's Hospital where Sarah (Dr. Sarah Zavala, audiologist) had offered to literally babysit Sylvie while I ran over to another building to pick up and pay for Sylvie's hearing aids. Michael was dealing with a work fiasco (boycott Momofuku!!!!!) and couldn't get to the hospital until later. As I handed over my AmEx card to pay for the $5240 hearing aids and asked about supplemental insurance, the receptionist looked at me in shock when I told her my insurance would not cover them. I left their office with a giant box filled with gadgets and gizmos and and an elephant puppet. Michael had arrived at the Children's Hospital where they were all enjoying the Carousel cupcakes that I gave Sarah. In the meantime, I forgot which level I was parked on, had to walk around and around and around until I found Black Car and then headed over to the outpatient parking lot around the corner.

First off, Sarah was devoting her personal non-work time to helping Sylvie and us learn how to use her hearing aids. She is so incredibly kind, thoughtful and generous. She's been with us since early February, when she refused to complete a hearing test on Sylvie because she was clearly in intense pain. Instead of having us wait for the hospital transport guys to bring us back up to Sylvie's room, she took us herself. She visited Sylvie almost every time Sylvie was on the 5th floor and continued to perform all the monthly hearing exams herself. I've seen her cry. A few times. And she's hugged me while I cried, too.

Today we all sat on the floor playing games and learning all about the intricaies of hearing aids. Those little buggers are very complicated! We marveled at the pink glitter molds. Sylvie was not amused. It took Michael, Sarah and I all our strength to wrangle the first hearing aid into Sylvie's ear. Not to mention, we promised Sylvie that Rapunzel Barbie would be waiting for Sylvie at home. She calmed down. Sarah let Michael, Sylvie and me learn how to insert hearing aids into her left ear. Over and over. I'm not a betting woman, but I guarantee Sarah needed to take Advil tonight. And then Sylvie started having fun. She let us put in the other hearing aid. She giggled. She ate a strawberry cupcake AND a blue cupcake. She marveled at Barbie Rapunzel that was playing on the monitor. And then we all got to go home.

One might think that after all our doubt despite all the diagnostics that perhaps... Sylvie hears better with hearing aids and knows it. On the way home, she was singing "Favorite Things" and a bunch of Laurie Berkner songs at the top of her lungs and you know what, her pronunciation was much better.

We were so tired when we got home that we all just pushed around the ribollita that I had made earlier. I had just enough time to TiVo "American Masters presents Joan Baez: How Sweet The Sound" which was on PBS at 8 (yes, that's a shameless plug because I've been working on the DVD and soundtrack for the past year and am a huge fan of Baez's unyielding commitment to her beliefs for over 50 years). I was supposed to see my brother's band Day After Tomorrow perform at Arlene's Grocery at 10 but there was no way I could deal with going into the city. Instead I'm unwinding watching "Gossip Girl" and am grateful that Michael is not making sarcastic comments. In last week's episode, Hillary Duff and Serena are hiding out at A Hundred Acres which is around the corner from my office and a favorite of mine! Yippee. Lucy is sleeping on the floor like a giant teddy bear. You can not rub her head or she'll fall into a deep sleep and Michael literally has to carry her up the stairs.

When Sylvie saw Caroline tonight, she declared that her ears were "all better!"

Afterall, tomorrow is another day.

Early to Bed

For the past two nights, Sylvie woke up around 3:30 and did not fall back to sleep. Michael did overtime Saturday night with Sylvie and I spent the better part of last night saying "Mommy needs to go to sleep" while Sylvie demanded I read Eloise or Snow White. We have a reissue of the 1954 Kay Thompson book that I picked up on the clearance table at Anthropologie years ago and as kitschy as it seems, I have to constantly skip over parts that are totally inappropriate, whether Eloise is commenting on the fancy folks smoking in the elevators at the Plaza Hotel or terrorizing the hotel guests. Sylvie does not need encouragement in that area.

Caroline, who I've dubbed, the Jackie O of Brazil (I have to Netflix "The House of Yes" for her) entertained Sylvie while Michael and I took the dogs to the Quiet Path. We ran into our friend Steve Jones who we had not seen since before Sylvie became ill although Michael has talked to his wife Linda here and there. Linda is our friend and real estate broker and I know them through doing business with their sons who founded the bombastic extreme ski film company Teton Gravity Research.

Once the dogs were officially wiped out, we came home, loaded up the car and headed to Burlington for the afternoon. By the time we arrived, Sylvie was asleep and Michael wanted to nap in the car, too. So off Caroline and I went exploring Church Street. I love Burlington. It reminds me a lot of Madison, Wisconsin, where I went to college. It's a very educated yet liberal small city on a lake with a cool little downtown and car-free main drag. After numerous trips back to the car where Michael remained out cold, finally I called his phone to jostle him awake. Sylvie got up and we sped over to the bathrooms in the mall with our portable potty seat in hand (thanks to my friend Jenny!). Then we cruised over to Sadie's Diner for grilled cheese, burgers (a veggie burger for me naturally) and Sylvie went from being a rotten apple to having a pretty splendid time. Which means we all had a great time. I'll upload more photographs tomorrow.

We got home in time for Sylvie to eat some miso ramen noodles and dance around to Harry Belafonte "Jump in the Line." I think we may need to make "Sylvie's Holiday Mix" this year because her playlist has grown quite significantly since her May 12 birthday mix.

Off to sleep just in case Sylvie wakes up early again. I looked at a photo of Lucky when Sylvie was born. No gray muzzle. Not a single white hair on her golden snout. And now, three years later-- she's whiteface. What does this say about us?!

Lovermont

We took turns playing with Sylvie in the pool at The Swimming Hole, an indoor pool and athletic facility funded by Stowe's local snowboard superhero Jake Burton so that we could also work out in the gym yesterday. I never get sympathy looks from strangers glancing at our mini GI Jane with the port protruding from the right side of her chest. Michael on the other hand-- he gets it all the time. Perhaps taking care of any child, no mater how sick is 'this woman's work' but seeing a dad zooming in the supermarket with a skinny bald little girl in a Carmen Miranda dress, strolling through the mall with a bald toddler dressed like Alice in Wonderland perched on top of his shoulders or frolicking in a swimming pool playing "Daddy Shark" yields a much greater emotional response and dare I say, intrusiveness? Conversely, Michael does not like being accosted by random people, usually women, who befriend him because he's the dad of a child who was or is ill.

We are having an awesome time in Vermont, enjoying peak fall foliage although it's FREEZING and expected to snow 3" tomorrow. Caroline is having a ball, too. She showed me a list of places in the United States to visit that she initially drew on a napkin at a college bar and Vermont is on the list, so I feel pretty good that we're already showing her a good time in such a short time of her being with our family. Caroline is from Curitiba which is the cultural capital of Brazil, voted "best place to live" by Brazilians. She's never seen snow so tomorrow should be interesting. I've outfitted her with my red double-layer LL Bean Storm Chaser 3-in-1 jacket, my fancy Barney's snow/mud boots originally bought with a gift certificate from a former boss and Thinsulate glove liners.

Last night, Caroline babysat so that Michael and I could have our first date night in Vermont in 3 plus years. To celebrate the occasion, we returned to Hen of the Wood in Waterbury whose chef was named one of the Top 10 Chefs of the Year by Food & Wine this year. Their credo is 'Find the shortest, simplest way between the earth, the hands and the mouth (Lanza del Vasto)" and true to form, every item on the menu credits its origin. They feature a spectacular cheese menu ENTIRELY comprised of Vermont cheeses, too! I felt like a cheese snob lunatic when reviewing the list having tried or previously purchased six out of the fourteen selections. We tried the 'Clothbound' cheddar from Cabot which might sound pedestrian but Michael told me that it's aged in the Jasper Hill Farm's quarter of a million dollars cheese caves so essentially it's as if Jasper Hill Farm made it. That works for me. I was in cheese heaven. We were undecided who would be driving home so instead of sharing a bottle of wine, Michael had a pretty outstanding glass of 2005 Canoe Ridge Vineyard cabernet and I had a pretty decent glass of 2005 Spencer Roloson "Palaterra' blend. We toasted our night on the town, scoring the only seating for 6 weeks and to Caroline for giving us the opportunity to have a great meal once again, in Vermont. Michael started with the Rhode Island calamari (that Mark Bittman raved about in The New York TImes), while I opted for the local salad greens since it featured Pete's Greens, chiogga beets and shaved fennel. I will order anything on any menu that contains beets and/or fennel. Michael had a local grass-fed rib-eye (his toss up was pork belly with some exotic au jus) with locally foraged mushrooms while I had cast-iron seared Maine sea scallops with a cabbage, apple, fennel slaw. When we got home, as any night we actually go out, our punishment is Sylvie being up the entire night.

We couldn't wait for the sun to rise so we could start our day.

Today we headed over to the Craft Fair where I got Sylvie a very fancy new hat, Michael ran nine miles on the Rec Path and we hit up the amazing playground behind the Stowe elementary school. Caroline and I went to the Farmer's Market where we bought local cheeses, veggies and pizza made in a homemade brick oven by some real live vermont hippies. Later, Michael and Paul, Jette's dad, harassed each other over the phone about baseball. Caroline and I picked up our friend Chris's new fishing reel at the fly fishing shop although I marveled at the dead skinned animal that they were selling as a hunting decoy. Since Michael was eager to watch the Yankees, Caroline & I went out to dinner.

Lucy ate part of the mudroom stairs. There are smart dogs. And there is Lucy. She's gorgeous. Gentle. Not too bright.

Sylvie has been drinking so much chai protein drink that it's been relatively easy sneaking into it Vitamin D, Milk Thistle and probiotics. She loves her 'light pink' medicine which is Bactrim and fights us on the 'buttery one' (flax oil), fruity one (Floradix daily vitamin mixed with extra vitamin C). I have to make an appointment for a check up with Dr. Harris a week from tomorrow and also for a (gasp) flu vaccine. When ALL of Hackensack University Medical Center's Children's Hospital is administering thimerosol-free vaccines, you have to wonder about thimerosol and vaccines in general. Otherwise, Sylvie is not permitted to get any vaccines until at least January which is great, considering I'm opposed to most of them anyway. For reasons unknown to me, chicken pox would be VERY bad for Sylvie but since it's a live virus and she's not currently immunized against it, I'm actually not sure what the protocol is. If she were to be exposed to it, we'd have to rush her to the Reuten Clinic for an immunoglobulin injection.

On Wednesday, I have to pick up Sylvie's hearing aids (to her, they are known as Magic Hearing Buttons although I refer to them as Toddler Engagement Rings) and then have them fitted, adjusted, learn what to do, etc. I don't expect it will be easy however when Sylvie gets to watch her favorite movies in Surround Sound that night, I am hoping she will realize they are actually beneficial. My bro's band is playing at Arlene's later that night so I imagine it will be a very hectic late afternoon and evening. I'm hoping we can make plans with Jette's family soon because not only do we all miss them but I think that Jette & Nevada will make Sylvie feel better about her hearing aids. Nevada came with us once to audiology and she and Jette have the ability to somehow get barrettes into Sylvie's cropped hair and make her feel like a normal little girl. I did order on Etsy custom Hello Kitty and Little Mermaid "oto" clips that will attach to her shirt.

Note to self: call Ridgewood Board of Education and Bergen County Special Services, Assistive Technology on Tuesday regarding FM monitor/receiver for Sylvie's teachers.

On that note, off to sleep and looking forward to another georgeous fall day in Vermont!

Working for the Weekend (lost post from last weekend)

I'm working on my holiday cookbook, catching up on Gossip Girl and Ken Burns' "The National Parks: America's Best Idea" while Sylvie sleeps and Michael heads off to a bachelor party with Andy. I'm not quite sure where they're staying, I think the Borgata, or whose bachelor party it is. I think Andy wanted to secure his ability to go to AC for the night by inviting his other wife along. Not a problem for me although I'm trying to figure out how to deal with Lucky Dog and Lucy the disobedient puppy and Sylvie tomorrow morning.

So I met my friend Jim on Arthur Avenue in the Bronx yesterday. I haven't been since I was about 12, after a trip to the Bronx Zoo with my family led by my adventurous and awesome grandpa. Yesterday was awesome! Jim's the expert so we met at Teitel Bros. on the corner of 186th Street and Arthur Avenue. Headed down the street to the butcher where I picked up for Michael a couple of gorgeous strip steaks and then to the indoor market, founded by former NYC Mayor Fiorello Laguardia in 1940! As we entered, we had quite a sighting, Don Ienner, who was the chairman of Columbia Records and Sony Music during the 12 years I worked there. He's essentially a formidable guy with a brilliant smile. If you ever worked with me on the 25th floor at 550 Madison Avenue between the years of 1994 and 2005, you'll laugh when I contemplated how funny yet unrealistic it would have been had I been carrying a bag of microwaveable popcorn-- grounds for being escorted out of the building.

I picked up fresh mozzarella cheese still warm, a soft triple cream cheese from Sicily, artichokes as big as my head, cured black olives, homemade linguine and ravioli as well as sopressata salami for Caroline. Our final stop was at a bakery for rainbow cookies and cannolis (for a Sukkot dinner at our friend's tomorrow night). This is the real Little Italy and the prices were pretty amazing, too.

Tomorrow is an ambitious day filled with the Alex & Sam event at CItibabes featuring Laurie Berkner and Sukkot dinner at our friends.

Whistle While You Work

Welcome to October. My favorite month.

Ah, I love Thursday nights, after Sylvie has gone to sleep. We're watching TiVo'ed episodes of "Criminal Minds" and we just polished off a box of nine of the most decadent truffles I've ever EVER experienced from Bespoke Chocolates. Not only are they organic, but they're made from really exquisite ingredients.

I haven't physically gone into the my office since the week after we had the big scare around a month ago so I found myself not enjoying the early morning frenzy. Not to mention, Sylvie woke up with a cold, something we haven't had to deal with since before last January. In fact, I don't think Sylvie even had a single sick day from pre-school last year until The Big C. I called up the school to say that Sylvie wouldn't be in today. Otherwise, she was in an awesome mood. Better yet, she wore princess underwear and used the potty the entire day!!!! My friend Srabani gave me her daughter's barely-used Barbie toddler bike with training wheels that is hiding in the garage for the occasion. I also won on eBay a 25-piece lot of My Little Pony's for the potty training occasion however they smell like a carton of Camel's and are currently being fumigated. I fear for the lungs of the little kids who played with these critters.

Getting back to the work thing, I missed the last express train this morning and it took me what seemed forever to get to the office. I was having a slight panic attack, playing over and over in my head the scene in the pediatric emergency room on February 10th when I called both of my parents, my dad was in Florida, and my gasping for breath trying to say that Sylvie was very very sick. My eyes got weepy just thinking about it. I took my mind off of it by finally reading The Sunday Times, every section. And the Time Magazine installment on the dynamic collapse of Detroit. If you're at all thinking about the payroll of the Detroit Pistons or have any nostalgia for Motor City, then you really need to read this article.

After my meeting, I grabbed a cab to Commodities where I picked up groceries and the car. Drove home in time for Sylvie to change into her fancy new pink corduroy pleated dress that she wanted to show Sarah (Dr. Sarah Zavala, audiologist). I took a change by keeping Sylvie diaper free but she seemed very determined to be a big girl. Sylvie asked if she could have a playdate with Jette at Jette's house which I said of course, when she no longer has the sniffles. We parked in B2, Sylvie's favorite for some bizarre reason and headed up to the 2nd floor. Once again, Sylvie and Sarah exchanged a Chariot's of Fire embrace and they walked hand in hand to the audiogy booth. Sarah gave Sylvie a present-- Oliver the mouse who has special magical hearing buttons. Sarah said they will fit on her Fancy Nancy doll quite well so we will make the swaperoo next week. Today's test or retest involved holding something that looks like a headphone directly onto the bone behind Sylvie's ear. Then we repeated the same exercises that Sarah has performed for the past 8 months (3 times in the past 3 weeks, too) and this too yielded the same exact results. Normal hearing except in the higher frequencies (the k, s, th, v sounds) where it's diminished, not deaf though. Now that we have repeated the test three times through loud speakers, headphones and now bone with the same exact results which also correlates to the cochlear inner ear hair vibration test thingy there really is no disputing Sylvie has hearing loss. To explain it to me in greater detail, Sarah played for me a pre-recorded conversation between two people where one has normal hearing, the other 50% so that I could hear what Sylvie is hearing. Basically, Sylvie hears fine except those letters sound like they are underwater. In her Montessori preschool, it's fine because the kids learn by example and quiet demonstrations. Put her in a classroom with background noise et cetera and she may be frustrated. The fact is, right now, she has a great vocabulary so it's never apparent. In addition to Sarah's tests, we all have our own unscientific tests which again, Sylvie passes with flying colors. These include our making noise or talking to Sylvie while she's listening to music, calling to her from a distance with background noise, whispering from behind and so forth. Ok, I won't dwell on it anymore. Sylvie needs hearing aids. The inner ear molds are pink glitter. They'll be ready next week. They cost $6,000 and insurance does not cover $1 of it. It's a total scam. If our policy was written in NJ, it would be covered. In 2010, my current plan "might" cover $1500 of it. But for right this very second-- nada. Next up is getting the Board of Education to provide Sylvie's teacher(s) with a FM thingy that they wear around their neck with a little microphone which broadcasts right into Sylvie's ears. I've been putting off my letter writing campaign but I really must do it tomorrow. I'd sooner get Sylvie's ears pierced with 1 carat diamond studs than drop another $3,000 on the FM monitors. On that note, I must also make a few calls regarding the Strides For Sylvie toddler music concert or concert series that I want to produce in the next 6 months.

Tomorrow, I have a business lunch with my dear friend Jim and since neither of us has to be in New York City, we decided to meet on Arthur Avenue in the Bronx. Whereas I might not eat salami or anything else in the porcine or strange meat department, I overcompensate in the cheese department. I might have to bring a cooler. I have high hopes for buratta, fresh ricotta, taleggio and more.

Sylvie has a make-up swim class tomorrow. She's slept through the past 4 weeks out of a 7 week class so I am determined for her to be raring to go unless her cold persists. Michael is taking a 3 hour yoga immersion class tomorrow night about inversions which I am so proud of him for doing. I'm going to a friend's birthday dinner at Harvest and will either be Andy & Catherine's third wheel or their designated driver. Sylvie is sleeping over my parents' house and depending on how she feels, we may or may not go on Saturday to the Dan Zanes concert in Asbury and her friend's birthday party in the evening. I told her today that we were going to see Laurie Berkner on Sunday at the Alex & Sam benefit and that we have to decide which song to make a picture of for Laurie. Last time it was "Rocketship." I'm a new and devoted fan of Alex & Sam so hopefully while Sylvie and Samantha are doing the samba, I can get in a little shopping.

Sylvie and I picked up her Bactrim refill yesterday at Town & Country and I was excited to see there's a Project Ladybug event happening on 10/17. I think I can convince Cindy and Lisa to come out in the hopes of seeing their favorite Real Housewives of New Jersey.