In Memory

January 17 concert in memory of Sylvie featuring Suzi Shelton.

Hello everyone,

It's Cindy and I wanted to post information regarding a Suzi Shelton concert that will dedicated to the beautiful Princess Sylvie. This show will benefit the Tomorrows Children's Fund, a charity that is very dear to Audra, Michael and Sylvie.

The wonderfully talented Suzi Shelton will be performing on January 17th at the Rosen Theater at the YM-YWHA of North Jersey at 11 am. Most of you may be familiar with Suzi's music. She was one of Sylvie's most favorite people in the world. Suzi's music and her visits always brought a smile to Sylvie's face. And if you were lucky enough to get any of Sylvie's super duper birthday mix CD's then of course you know her! After over 6 months of not taking a single step, it was Suzi who put a spring back in Sylvie's step and got her moving and grooving again.

TCF's mission is to create a healthy and warm environment for children with cancer and their parents. And I've seen first hand how amazing they are to all the children, including Princess Sylvie. They are a wonderful organization.

For those who can come, please join us to listen to some great music that will benefit Tomorrows Children's Fund and honor the memory Sylvie.

In addition, there will some terrific silent auction items, too!

Concert Information:
January 17th, 2010
Rosen Theater in the YM-YWHA of North Jersey
http://www.ymha-nj.org/
Adults: $10.00 Children: $8.00
Sponsors: $100: includes 4 reserved seats and a meet and greet with Suzi Shelton
Children under the age of 2 are free.
For more information contact Shari Kalter at (973) 595-0100 ext. 272.
To buy tickets please call (973) 595-0100 ext. 237



*The picture posted is from Suzi's show at Little Airplane Studios. Sylvie's even wearing her Suzi Shelton dress that Audra bedazzled (of course) with sparkly music notes and cupcakes!

Posting from Grandpa (my eulogy)

All of us have seen Sylvie through a different "pair of glasses". As the the daughter of a good friend; as a pupil in school; as a patient in a hospital; as a customer in a store; as a child just having fun in a swimming pool; as a patron in a restaurant; as the first grandchild of a friend;

and as a mommy and a daddy. It has also been my privilege to call her my grandchild, if only for a little more than three years. Most of you reading this honored her by attending her memorial service. I did so much want to utter my parting words to Sylvie as they would not be falling on deaf ears, but would have been absorbed by her bright and receptive mind. I could never have finished the first sentence without becoming incoherent so I had Rabbi Wylen say them for me.

But I want this to be a permanent testimonial to the bravest and most beautiful child to ever grace this earth.......

"To have only been with us for 3 years and 200 days, but to have touched so many lives, is a truly remarkable accomplishment for such a little princess. Her touch melted my heart - her words brought a smile to my lips - her personality won you over - her presence made you love her. Sylvie will always be remembered.

Sylvie indured and overcame a multitude of desease, sickness, complications and pain. The strength of that little body should be an inspiration to all of us. Maybe it was the princesses that Sylvie loved and adored that gave her strength. Certainly it was the power of stickers that sustained Sylvie.

I am so fortunate to be left with one lasting memory of her little arms wrapped around my neck while she fell asleep on my chest. And now she sleeps forever - no more tubies - no more needles - no more machines - no more medicines - no more probes. Sylvie can finally sleep in true peace".

Light a Candle

Hello everyone,

This is Cindy, Michael & Audra's friend and Princess Sylvie's honorary "Tita/Aunt." I'd love to pass along information regarding the Worldwide Candle Lighting tomorrow, December 13th at 7 pm.

Info below:

Excitement has been building as the thirteenth Worldwide Candle Lighting December 13, 2009 approaches. The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

The Worldwide Candle Lighting started in the United States in 1997 as a small Internet observance but has since swelled in numbers as word has spread throughout the world of the remembrance.

Please join us tomorrow evening and light a candle to remember....

Eulogy to Sylvie

As promised, below is our eulogy which Rabbi Wylen read on our behalf last Tuesday.

Stickers made everything better for Sylvie. She obsessively collected them. She held people ransom for them. She exploded with joy at the sight of them. She was motivated by them. She spent hours upon hours thinking about them, begging to go shopping for them, trying to sneak them into school, obsessing in the store about them, carrying them around, shaking down her doctors and nurses for them, making us stuff our pockets with them, sleeping with them. Every now and then, if we were lucky, she’d share one with us. Or you. They made her incredibly happy. She would LOVE knowing that each and every one of you was wearing a sticker and would probably want to apply them entirely by herself. Thank you for indulging us by wearing stickers.

Sylvie was a gift from heaven that was sent to help us and teach us for 3.5 years. She was not just beautiful. She was extraordinarily beautiful. She was not just special. She was extraordinarily special. She was radiant, glittery both spiritually and physically. Sylvie saw magic and wonder in absolutely everything. Her intuition was remarkable and sometimes a little frightening. Her emotions and expressions were exponentially bigger than her petite size. And Sylvie’s voice was certainly that of an angel. She was earth, fire, air and water all wrapped up in one pint-sized package. It goes without saying that her strength was greater than ours or yours. Losing her feels like we have been robbed of everything at one time.. It is unfair, unjust and clearly too soon although friends have suggested to us that Sylvie was called back because she had her next special assignment. As Rabbi Wylen said Sylvie was a supernova.

Perhaps Sylvie’s love for all things make-believe was a way for her to cope with feeling ill and her own way of being positive. We joke that her best friend Samantha ‘lit the match’ by forcing Sylvie to wear her then too-big Jasmine nightgowns and tiaras but that Sylvie (and we) ignited an entire universe of princesses, fairies and ponies. When we would go hiking, one of us would run ahead and hide stickers from the Sticker Fairy in the trees. Or the Garden Fairy would plant a sheet of princess stickers among the swiss chard. Or the Woodland Fairy hid a cornucopia of them beneath a shrub. We thought we blew it when the Blueberry Fairy ran out of stickers, in the rain, while we selfishly picked a pint of berries up at Sylvie’s favorite place, “Mountain House” in Vermont. She was motivated to walk again by both Hello Kitty stickers and Ponies courtesy of another best friend and physical therapist, Tracey. We had to buy bulk quantity of ponies on Ebay to have on hand as surprises, presents and rewards although Sylvie began asking if there were any ponies hiding in the washing machine where they were hidden.

Our home has always been filled with sound—laughter, music, pots clanging, pets playing—never a dull moment. As you can imagine, our life has instantly become very VERY quiet. The day Sylvie was born was the day we stopped really needing an alarm clock.

The pitter patter of little feet across the hardwood floors no later than 7 am, usually 5:55 though, followed by a surprise exclamation “Mommy, Wake up!” “Daddy, I woked up!” and often, “Is it light out? Are stores open” were just a few of the special phrases that are emblazoned in our hearts every single day.

Since Sylvie was an infant, music has been a central component in her life which was immediately obvious to anyone who had ever met Sylvie. She was always singing, converting words into song lyrics and dancing like a little maniac. It got her back on her feet during her treatment and recovery and we credited the personal attention showered upon Sylvie by her favorite kinder rock stars who went out of their way to make Sylvie feel like the biggest VIP at their concerts and she looked forward to showing them her latest dance moves, her ability to walk, run, perhaps a fancy party dress, Princess nightgown or toy. No trip in the car would be complete without Sylvie’s iPod mix and anyone who has experienced her screaming “I Hope My Mama Says Yes,” “Road Trip,” “Welcome Table,” or “Rocketship” knows what I’m talking about. Going to temple, whether for the high holidays or Tot Shabbat was such a joy for us. We all shed our inhibitions dancing, chasing and singing.

Sylvie was a magnetic little girl. Her personality—her sheer vocabulary!—lit up the room. Unless she didn’t want to be there, and trust me, if that was the case, she let you know. She made friends wherever she went and I think she really inspired people to celebrate and appreciate life a little more. She was magnetic. A leader. A friend.

Sylvie had the ability to build intense relationships and private moments with family and friends that each could call their own. Any trip with Sylvie, whether for a check up or to a restaurant was like her little political campaign trail. The shortest distance between to points may be a straight line, but for Sylvie, it included many stops along the way whether it was visiting a friend or two, earning a trip to the art store, the Hello Kitty Store, the merry-go-round, Princess Store or her new discovery, Target.

I woke up early, opened Sylvie’s closet doors. Spilling out were ballet shoes, red glitter shoes, leopard boots, butterfly wings, tiaras, sunglasses, coordinated hats & gloves & purses of course and princess dresses—and took out her favorite Sleeping Beauty Dress which Sylvie wore at every single moment. I held it. Buried my face in it. Inhaled it. Folded it. Repeated this process over and over hoping for some kind of cosmic acknowledgement that you were in the room with me. I was being shortsighted because, Sylvie you are everywhere.

SYLVIE: A friend assured us that you were called back to do some very important work and perhaps you were here so briefly with us to do the same. Our lives were completely enriched by your presence and completely & entirely empty and lost without you. We learned so much from you as you fought something as terrible as Stage IV liver and lung cancer and BEAT IT. You had to learn to do things so simple (or NOT) such as walking and eating again. You found joy in the smallest things and magic in EVERYTHING. You inspired us because you were stronger than us. You filled our hearts and minds with love so great that we felt like a helium balloon about to burst at any moment. Sylvie Rose Hughes, we love you more than the biggest number in the world times the biggest number in the world. To the moon and back again. And again. You have ALWAYS been with us every single second of every single day and our physical separation will not change that. One day we will meet again and hope you will have some sparkly stickers waiting for us. Come to think of it, we know you will.

Chanukah

Friday night is the first night of Chanukah. Last year, my valiant attempt at making the holiday a conscientious event took me until this year to manifest. I was annoyed at the lack of Chanukah representation. Unless you personally wrote a letter to an editor of a magazine about how your Chanukah is special chances are you'd see far more red & green than silver & blue. Since we were raising Sylvie Jewish, I also felt we needed to go a little overboard to demonstrate this. And anyone who knows me, knows that it just isn't a holiday without goodwill.

When we first moved to Ridgewood and celebrated Sylvie's 2nd birthday with our new friends, much to Michael's initial embarrassment, I requested that friends, in lieu of presents, bring bags of pennies for Pennies For Peace which is part of the Central Asia Institute (i.e. Three Cups of Tea) that builds schools and provides supplies, mostly for girls, in Pakistan & Afghanistan. Sylvie's cup already overflowed with three times the volume of everything a little girl could want or need. Michael thought our friends would think we were crazy hippies. Sylvie was too young to understand but I thought it's never too early to instill goodwill and generosity! Already, having a natural food store in the East Village, Vermont license plates and my breastfeeding Sylvie until she was 2 provided enough fodder for us to be a little "different." I told Michael that our friends & neighbors could think that I was the crazy one and that he's the normal one. It took me months to actually exchange the coins for bills. They rattled in the back of Blue Car and although Michael never said anything, I'm sure the sound of jingling pennies drove him insane! There was over $60 in pennies and I wrote a check for much more than that and sent it off to Montana.

And so I laid out my Chanukah plan. Every day, of the 8 days, would have a theme which could be expressed in any number of ways, regardless of cash flow. I had extra themes so that in years to come, we'd never be short of ideas. This is what I mapped out for this year:

EREV (evening) 1, Dec 11 Friends & Family night (Gift for family, family party) — I also bought Sylvie two fabulous headbands at Crewcuts because she just loved Caroline's fancy ones. Her hair was still a little too short for barrettes but she loved accessories (wink, wink) and headbands were the golden ticket for Sylvie. It was positively fate that Caroline should enter our lives this fall and have the most incredible collection of headbands that I've ever seen except maybe Leighton Meister's on Gossip Girl. Sylvie would try on Caroline's and run to the mirror where she'd pose and bat her long eyelashes. She would repeatedly try and steal a silver one with a big rhinestone butterfly. Sylvie is wearing that one right now.

DAY 2, Dec 12 Entertainment night (a movie, music or tickets to an event night, a musical instrument)—The Princess & The Frog movie at the Zigfield, Snow White DVD from my aunt Sharon, a Remo ocean drum like the one she'd play in the hospital

DAY 3, Dec 13 Game Night/ Special present night —Melissa & Doug Puppet Theater, Dollhouse from Grannie Annie

DAY 4, Dec 14 Environment night present or donation that recognizes or benefits the environment) — Subscription to National Geographic Kids

DAY 5, Dec 15 Healthful Hanukkah night (present related to fitness, health, well being, outdoors) —Hopefully enough snow for family outing with the rainbow sled Sylvie gave Michael for Christmas last year

DAY 6, Dec 16 Educational night— Sylvie/ Fancy Nancy Tea Party at Neiman Marcus & new holiday book, get Michael the Augusten Burroughs book

DAY 7, Dec 17 Tzedaka night —give presents to a needy family, bring treats and presents to HUMC

DAY 8, December 18 Adventure night —evening or theme related to travel from a book to a movie or a trip that hopefully we’ll be going on!)

Sylvie loved Chanukah. We had to keep her menorah out until around February last year. And year round, she'd have us read, "Chanukah: the Festival of Lights" to her over and over. My mom gave her another book but Lucy ate it a few weeks ago. We'd sing "Chanukah, O Chanukah Come Light the Menorah" and the Dreidel song year round which I'm sure doesn't surprise our friends and family since at this point they know, little Sylvie had rhythm. You know the phrase 'Don't sweat the small stuff, it's all small stuff" ? Obviously I don't subscribe to that whatsoever.

The Nutcracker

Since I was a little girl, my parents took me to Balanchine's Nutcracker ballet every holiday season. We'd mix it up with different productions from the extravagent Lincoln Center to the intimate Paper Mill Playhouse. Last year, we began the tradition with Sylvie. First we went to Lincoln Center (a colleague and friend who works at The New Yorker invited us, otherwise it would have been a bit too indulgent to take a 2 1/2 year old Sylvie). The following week we went to Bergen PAC. Sylvie loved it, albeit terrified of the Mouse King. At Lincoln Center, we had to watch the second half in the lobby because Sylvie turned into a human beat box and the paying folks in the adjacent seats gave us dirty looks. She slept with her nutcracker for weeks. We read the Nutcracker book over and over and over again. Sylvie watched Barbie Nutcracker endlessly, still screaming at the Mouse King.

This year, I stalked the Bergen PAC box office and before the ticket eblast was sent out, I bought a block of seats in the 4th row. I had Sylvie's dress picked out-- pink, purple and green plaid with a green sash-- super fancy and from Hannah Andersson. She's now buried in it.

As unconventional as it sounds, I felt compelled to go today because I know how much Sylvie would have enjoyed it and perhaps, she'd be there in spirit.

Coincidentally, a former co-worker of mine from the Sony days is the head of marketing at Bergen PAC. My friend Michelle reached out to Angela who was eager to help out in any way. Today's performance was dedicated to Sylvie and when they made the announcement before the program began, I shed the first of many tears from Row D. Samantha sat to my left, my mom to my right. Caroline and Michelle were also with us.

Samantha told me that Sylvie made the snow yesterday with her pink snowmaking machine. She was wearing the silver "Samantha" necklace that Sylvie gave her for her birthday. Then Samantha told me that she missed Sylvie. I told her, me too. Then she told me she wanted wings so they could fly together. During intermission, Angela and the head of the ballet presented me with an autographed poster from today's show. More tears. Towards the end, Samantha told me Sylvie was there and brought a telescope so she could see very close up. More tears. I wanted to see her, too. Catherine told me that Samantha has conversations with Sylvie. That makes me happy.

The girls first met when Sylvie was 16 months old and Samantha was 2 1/2. Samantha decided that Sylvie was going to be her best friend. And like that the girls were inseparable. Samantha forced Sylvie to wear her velour Jasmine nightgowns and Mardi Gras beads. Sylvie tortured her and stole her books. Sylvie obsessively wore Samantha's dresses. We had to hide the polka dot dress. They went to countless Laurie Berkner concerts (and backstage) together. Samantha sat in bed with Sylvie in the hospital while they colored pictures together and watched, what else, "Barbie Nutcracker." They were like sisters.

Today they would have gone beserk at The Nutcracker together, too. I looked around all over for signs of Sylvie (i.e. blinking light on Christmas tree. Errant snowflakes) although clearly there's a little bit of Sylvie in Samantha so I need not look that far.

Over in Brooklyn, Suzi Shelton dedicated her concert today in memory of Sylvie.

Tomorrow I am going to post our Eulogy to Sylvie. Several friends who could not attend her funeral have asked about it.

Shabbat

Caroline, our amazing au pair, the Brazilian Jackie O, used to dance around the kitchen singing "Fly Me to the Moon" to Sylvie. Naturally, Laurie Berkner recorded it which is how it ended up on Sylvie's ever-growing playlist. The lyrics are so sweet and poignant that I wanted to post them. If you feel so inclined, sing them to your kids while dancing around your kitchen, just like we did.

Last night, at temple, a family friend grabbed Michael's hands and said that Sylvie is the brightest star in the sky. We think so too. I used to ask her if she wanted to be a doctor, nurse, social worker or someone who helped little girls feel better and she always said no. Had I asked her if she wanted to be an angel, I'm sure she would have wholeheartedly said yes.

Temple was really hard for us. I truly embrace the notion of Shabbat and casting aside the week's work and worries for 24 hours of family embracing, literally a day of rest. The notion of Shabbat is partially responsible for the survival of the Jewish faith-- that no matter what hardship and persecution that the Jews were facing, they had Shabbat to look forward to. But watching the 12 year-old kids who are studying for their B'Nai Mitzvah's carouse with the Rabbi, or the family of three sisters on the other side of the aisle play with each other during the service was so incredibly difficult to watch that I couldn't hold back my tears. I imagined over and over and over again how much Sylvie would have loved being there. I kept seeing her angelic school picture come to life. I felt cheated and robbed. I felt like our life as a family was just reset back to zero. Like we're a lifetime away from being anywhere near that again. I fell asleep because I couldn't watch anymore and we snuck out immediately after because I couldn't face the well wishers afterwords. A really nice guy, father of three, did chase us to the coat closet to say how sorry he was.

Fly me to the moon
Let me play among the stars
Let me see what spring is like
On a-Jupiter and Mars
In other words, hold my hand
In other words, baby , kiss me

Fill my heart with song
And let me sing for ever more
You are all I long for
All I worship and adore
In other words, please be true
In other words, I love you

Fly Me To the Moon

Sylvie was extraordinary and judging by the outpouring of support from friends and family, it would be nearsighted to think that Michael and I were the only ones touched by her short but robust life and the untimely tragedy of her death last Sunday.

We are crushed. Devastated. Angry. Speechless. Confused. Sad. Lonely. Purposeless.

We are also so touched and humbled by the outpouring of support and love from everyone. Thank you. A million times over. The biggest number times the biggest number. When Sylvie was ill, it was hard for us to say, “Okay, we need help.” And when she fully recovered from cancer, it was a joy for us to share our happiness and we schemed over different ways to thank each and every person for making our days a little brighter. I can’t tell you what we need right now because we had learned that all we needed was our little supernova and without her, life does not go on as we ever knew or imagined it to be.

Reservations on the Next Train to the Moon

A few of my friends have understood references here and there about a very moving song, "M" by my friend Chantal. When Sylvie first got sick, Chantal yelled at me and told me this song had nothing to do with Sylvie because the song is about a child who was going to die. Period. And Sylvie wasn't supposed to die, therefore I needed to stop dwelling on it.

Sadly, unfortunately that is not the case. The greatest gift we all had was that Sylvie conquered cancer and we all enjoyed our own little honeymoon while Sylvie got to be a perfect, normal, little girl again. In any case, I've reprinted the lyrics below. We may not have been making plans to go to the moon although we were planning on bringing Sylvie to Disney in April.

Chantal Kreviazuk "M"

They must mean business
To say there's nothing worse
Then to let your precious love child
Leave the planet first

'Cause, oh whoa whoa
They've gotta just let her go

All the things that you swear you're gonna do
Reservations on the next train to the moon
Pack your things cause there ain't no time lose
And all the things you never ...

So I think we're gonna have to record her
Sometimes against her will
We're gonna keep her alive with black and whites
Colour moving and still

And then, oh whoa whoa
We've gotta just let her go

All the things that you swear you're gonna do
Reservations on the next train to the moon
Pack your things cause there ain't no time to lose

Let her go
Let her go
Let her go
Let her go

All the things that you swear you're gonna do
Reservations on the next train to the moon
Pack your things cause there ain't no time to lose

All the things that you swear you're gonna do
Reservations on the next train to the moon
Pack your things cause there ain't no time to lose

No time to lose
No time to lose
No time to lose

Additional Information for Tuesday

Funeral Info
Robert Schoem's Menorah Chapel
http://www.schoemschapel.com/directions
150 West State Rt. 4 (next to or very near the restaurant Chakra)
Paramus
201 843 9090

10:30 receiving friends and family
11:30 service begins

Cemetery
From there we go to
Cedar Park Cemetery in Paramus
http://www.cedarparkbethelcemeteries.com
735 Forest Ave
Paramus (Rt. 4 to Forest Ave. near Bergen Mall, pass the intersection at Soldier Hill Rd, main entrance on left)

If you have to go straight to the cemetery, enter the main entrance (admin bld. on your left), pass the admin bld, go right on main road all the way to the far right end of the cemetery. Road then goes Left, and mid-way down this edge of the cemetery you'll see where we are. But there might be another road closer to us all... not positive. Just follow the cars.

Sitting Shiva

Shiva will take place Tuesday, Wednesday, and Thursday evenings at the Hughes residence:


If you're not familiar with this Jewish custom, during these evenings, guests are invited to visit with the family and pay their respects.

All friends of the family are welcome.

Colour Moving and Still.

I've been making a list of what Princess Sylvie would like to take with her on her final journey.
Glitter
Hello Kitty stickers
The Polar Bear and the Rainbow book
A You're Adorable book
A Princess book of course!
Birthday candles
Butterfly something (must think about it)
My Little Pony
Favorite Sparkly rocks and shells
A purse, of course with family & friends photographs
And perhaps her Cinderella princess flashlight to light the way

Tuesday Information

Robert Schoem's
Menorah Chapel
W-150 Rt. 4
Paramus
201 843 9090

10:30 receiving friends and family
11:30 service begins

no words.

mommy and daddy love you so much.

Bleak Friday

Sylvie spent the morning lying listlessly in my arms in Dr. Rosen's office where he was a little surprise at just how wiped out Sylvie appeared. Pair that with her cough and he thought she might just have pneumonia but the bigger issue at this point I think was really dehydration. He called Annette at the Reuten Clinic where they both agreed Sylvie should come in for fluids.

After a quick trip to Town & Country to pick up Azithromycin for the pneumonia, Sylvie and I headed over to the Reuten Clinic where our car was literally inspected for hiding children since the hospital has a no-kids-under-18 policy except those with appointments.

Terri was already setting up a room for Sylvie. It was hard getting a blood pressure on her, her heart rate was racing (tachyrdic) and essentially she was too wiped out to stand, walk or talk. I tried to get her to pee and she fell asleep leaning against me while propped up on the toilet. Major dehydration.

They gave Sylvie fluids for the rest of the afternoon while she slept on and off. Some of her fan club members stopped by to say hi but she was too sleepy to either greet them back or kick them out. You never know what you get with Sylvie!

Our marching orders, now that we are home, is for fluids. And lots of them. And not just water. Juice. Soup. Anything.

I have a giant container of matzoh soup from my mom, more chicken noodle soup from my neighbor and Michael just brought home from work an assortment of beverages.

Bleak Friday, I need a nap.

Grateful Harvest

I had hoped that we would make and bring Thanksgiving dinner to our "family" in Pediatric Oncology & Hematology at HUMC when instead, Sylvie and I are sicker than sick. As it turns out there are so many organizations who already provide that service that we'll have to come up with something else!

What a week it's been.

Last Friday, Michael's brother Ed suffered a heart attack. Two stents later from the skillful hands of our friend Dr. Kim and an arsenal of medicine, Ed is recovering at home. The following day after a trip to ICU, we turned around and headed to Philadelphia where Catherine, Andy, Sara and Michael were all running the full or half-marathon. Actually, we were kicked out of ICU because the nurse wanted Ed to rest and "think about' what happened. Wow. That nurse was one tough cookie, as my mom would say. Once in Philadelphia, we were excited to see our friends Michelle and Scott and their adorable baby Ian. I made pretty awesome signs for Andy, Catherine, Sara and Michael and nearly froze my fingers off holding them up while cheering them on. It was so cold that all four ran their fastest times ever! I've cheered Michael on at three other marathons and have to say, I get hysterically weepy when the first runners come around the corner. I simply cannot stop crying. Then when an older couple began jumping up and down as their daughter ran past, once again, the tears began flowing. I'm a little hormonal to say the least.

Sunday morning, when I checked in with my mom, she mentioned to me that Sylvie had a fever Saturday night. We sped to their house to get Sylvie who was definitely under the weather. By Sunday night, her temperature was over 103. So while my dad was having knee surgery at Hackensack, I brought Sylvie to Dr. Rosen on Monday where he determined it was viral and to keep giving Sylvie Tylenol and fluids. Her fever broke that night but she hasn't eaten since. Has not eaten a morsel since Sunday night.

I'll spare you the details because if you have kids or grandkids or work with kids, well then you know that kids get sick and there's nothing worse than seeing your child helplessly ill.

We are however a little sensitive to it. I have to admit, I have had to literally restrain myself from Googling bad shit about you know what. I also admit to calling Dr. Rosen today, Thanksgiving. We're going to see him tomorrow morning. Ironically Sylvie's supposed to get a preservative-free H1N1 vaccine next week.

So ah, Thanksgiving. With the exception of my passion for cooking and baking, I don't subscribe to the Thanksgiving holiday or how we expand the original historical concept of celebrating a grateful harvest (see the must-read Howard Zinn "The People's History of the United States") to being thankful for good things that have happened in our lives. I didn't ask for our daughter to battle a life-threatening illness in the first place, nor do any parents of sick children, so I can't be grateful for her being well on this day either. "Thanks for making the past 9 months suck, let's eat turkey." But I get it, if your family lives far away and they all come together on this day, well then that's positively wonderful.

Michael and Caroline are at my parents house feasting while Sylvie and I hang out at home nursing our Tylenol. I told Caroline that my dad is the world's best turkey carver and could literally be on David Letterman carving a bird. Good thing he had knee surgery instead of hand sugery! I do miss not being with them though. This might be my first Thanksgiving EVER not being with my family.

Sylvie went to sleep at 5:15 so I'm powering through The Vampire Diaries that I previously recorded. I sent them off with a caramelized apple cake, a pumpkin cheesecake with ginger crust and marshmallow topping, a chocolate pumpkin tart and roasted root veggies. If I were a judge on Iron Chef, my secret ingredient would be pumpkin.

Michael's 40th birthday is on Sunday so I'm really hoping to be over this African Sleeping Sickness thing so we can go out to dinner and celebrate him.

OK the princess is coughing so I must run for now. I hope they bring me home dessert!

ArtWorks

An art project that Sylvie made in the Reuten Clinic will be exhibited at the ArtWorks exhibition "Express Yourself" this Sunday, November 15 at the Montclair Art Museum from 1:30- 5:00 pm.

Montclair art Museum
3 South Mountain Avenue
Montclair, NJ 07042
201 608 0146

ArtWorks "Express Yourself" is a celebration of the creative spirit of children and young adults who suffer from severe and chronic illnesses.

Please join us!

Hallelujah

MUSIC UP: "Hallelujah." The Jeff Buckley version.

Yesterday was a triumphant day. We checked into Admissions at HUMC, walked ourselves up to the surgery suite (sad we know our way there and don't need an escort) and Sylvie was actually... nice instead of psychotic. It was our third time there. The first, for her biopsy and port insertion last February, second for Sylvie's Hepatectomy last May and yesterday to remove the port. We had no idea they had their own playroom since usually Sylvie is having a kniption. Siobhan met us for a few minutes, but I knew Sylvie's friend Jette was downstairs in the clinic bracing herself for a spinal tap sans anesthesia so I told Siobhan that we were a okay and to head back to her. Sylvie really wanted to see Jette and we had hoped to see her later.

I saw Dr. Valda, who is very cautious around Sylvie because usually, well, usually she's a mean little bugger towards him. I promised him that she was a happy little girl and that Sylvie even had a present for him. He came into the playroom where Sylvie was seated in a big red wagon calling "Louise" (Ruby's best friend on Max & Ruby) on a toy phone. She looked up, walked over to Dr. Valda and gave him a Strides For Sylvie t-shirt. He said point blank, Sylvie was a different child. We all laughed. Then he asked if we had the champagne on ice which we replied, since August.

We got Sylvie into her green gown and met Dr. Mandalay the anesthesiologist. Dr. Olssen has been Sylvie's doctor for every other procedure so we went over how crazy Sylvie would be and to not take it personally nor make us wait around for Sylvie to drink clear liquids because quite frankly, she would be defiant. All good. Michael suited up in his white moon suit and I watched him carry Sylvie down the hall to the OR. She greeted the nurses by name. I cried tears of joy.

When Sylvie woke up, she was raring to go. Dr. Valda said she'd be very tired... eat a light meal... skip school... Not our Sylvie! We're probably the only former patients who voluntarily visit to the Pediatric Intensive Care Unit but my parents said that a very nice doctor with glasses sent his regards but that Sylvie didn't like him. I was determined to show off Sylvie's nice side. It was Dr. Dyme who is the head of pediatric cardiology, one of our favorite doctors and true to form, Sylvie was nice to him for the very first time. (Past times, she's literally been apoplectic).

I called Jette's dad and they had just left so we detoured upstairs to floor 5E, Pediatric Oncology/Hematology so that Sylvie could visit her nurses who she talks about literally every single day. It's worth noting, this was the first time Sylvie has ever willingly walked there. I pushed the automatic door open button and Sylvie literally RAN in and jumped into nurse Jessica's arms. It was like Chariots of Fire. We were all crying. Jessica, Katie, Gina passed Sylvie around and she hugged all of them. Then she told them about her new puppy, Lucy, "who is bad." It was an amazing moment.

From there we headed downstairs where Sylvie insisted on getting mozzarella sticks and I insisted she was going to puke all over us in the car. Dr. Sarah Zavala met us and Sylvie told her she's been wearing her hearing buttons to school every day.

Sylvie's like the mayor of the pediatric hospital.

Finally, we went home. It was a big day for all of us.

I suppose you could say the chapter is closed although every month we'll scare ourselves silly and sweat bullets while waiting for lab or CT scan results.

I told Jette's mom, Sharmon, that Jette is up next and that we are going to literally bring chilled champagne to the pediatric surgery playroom for when Jette's port comes out.

I had dinner with a few girlfriends last night and I really do feel like all of our families have been touched by Sylvie in such a positive way. Whether it's spending more time with our kids, being grateful for simple things like health & family or just slowing down a little I feel like our lives will forever be better. If Michael and I have learned one thing, although believe you me, we have learned many more than that, but for the purpose of this posting, we are completely intolerant of negative energy and attitudes. Look for the positive in absolutely everything you and your family do, do not cast judgements on anyone else and appreciate everything you have. Negative = negative.

When I was at the Holocaust Museum in Washington DC 4 years ago, I marveled at the photographs of young women walking barefoot under harsh circumstances and without coats or shoes for miles upon miles and thought, "I have no complaints. Ever." And after reading "Life, Faith, Cancer," a gift from Temple Beth Tikvah, it made me further consider the great mysteries and power or powerlessness of religion whether it's the notion of disease, sick children, the Holocaust, the Civil Rights movement, Rwanda, 9/11, Katrina, plane crashes and so forth. There really is no answer but I think faith is a very powerful and good thing regardless of how your or where your message is delivered.

Music Up: "Hallelujah." The Leonard Cohen original version.

Boca Chica

What a week! My last day of work was on Monday.
On Wednesday, Michael, Sylvie and I embarked on our first trip since December 2008—Boca Raton, Florida! We are the only family to NOT have any relatives there although I felt guilty that our accomodations/package included free golf and that my dad wasn’t there to take advantage of it.
Sylvie was as good as a 3 year-old possibly could have been on the plane. She was THRILLED to be taking a trip, flying somewhere else and renting a SILVER car (her favorite car color when playing “the car game”).
We had many reminders that this was a very special trip for our family and that Sylvie is a very special girl indeed. It began with the two giant Ziploc bags filled with refrigerated and non-refrigerated liquid essentials. Next came the BOX of EO Hand Sanitizer cleaning wipes and the scrubbing that we did of our entire row, windows, tray tables, seatbelts.
Sylvie had her own quirks. For example, upon entering any underground parking facility or building like, say, a brand new fancy modern hotel, Sylvie freaks out and thinks it’s a hospital. Once we cleared that up, Sylvie asked if the hotel lobby was like that in “Eloise.”
She was truly ecstatic with the hotel room, as were we. Sylvie ran around, hiding in the sheer curtains, pointing at the ocean and desperate to immediately put on a swimsuit, as were we.
After a makeshift lunch, we headed to the pool and beach where Sylvie continued to be totally fearless rendering us totally fearful. She was equally ecstatic with her tutu-like bikini that my mom got her a year ago although Michael was less than thrilled with the shark-bite scar across Sylvie’s abdomen. At least the scar kind of explains the short hair although twice we had to sort of explain to older kids that Sylvie was a GIRL and why she has short HAIR.
Before dinner, I went to Whole Foods to pick up more “mommy drink” which is the Bolthouse Farms chai protein drink although Sylvie was pretty wiped out and ended up not eating a stitch anyway. Sylvie was befriended by Ashleigh, who works at the Boca Beach Club, or I should say they were pretty enamored by each other. Perhaps it was because Ashleigh carried stickers in her pocket during breakfast, made Sylvie chocolate milk and even gave her a handmade fish gumdrop lollipop. I wish I took a picture of Sylvie holding Ashleigh's hand in the cocktail lounge Friday night. When we checked out, we made a point to tell manager how incredible she is.
I’m sure you don’t want to hear about the whole trip (Go Yankees!) so I’ll fast forward to Friday night when we returned from dinner at Morimoto to find Sylvie tucked in and sound asleep in the middle of our bed. Um, yes, we hired a babysitter. Anyway, Sylvie felt hot to us. VERY hot. We took off the blankets, got out the two thermometers that we packed and went to work. Shit. Annette had told me that because Sylvie still has her port (scheduled to be removed this Thursday!), if she runs a fever, she needs to go to a hospital, have her port accessed (translation: needles in chest) and then cultured. Annette was supposed to call me with a COG reference and in the back of my mind I thought I would call my college roommate’s dad who is the head of oncology/hematology at the U. That being said, Michael immediately called Jet Blue to see when we could get out. We texted both Dr. Rosen and also our friend Paul to ask them both what should we do. I called the Reuten Clinic and the on call doctor was not someone I know very well. We gave Sylvie Tylenol which is ‘against the rules.’ She cooled down. I thought Michael was going to have a stroke. I had to remind him that we were in BOCA RATON and not ZIHUATANEJO.
Next morning, we grabbed the 11 am flight back to LGA. My airport highlight included getting jumped in line at security by a dad with his two young sons—the boys smirking at me as they tried to sneak past me. Little did they know whom they were dealing with. I remembered them from the pool the previous day because the dad was on his cell phone and cursed in front of his kids and I felt a little bit self-righteous. So now I’m in a shit mood waiting in line and the same guy pulls a stunt like this… I squinted my eyes and said, “Sure, just go right in front of me. My kid had cancer and we’re leaving early because she’s sick and you just cut in front of me LAUGHING at me with your kids. Nice example your setting. You have no idea what it’s like having a sick child. Consider yourself lucky.” He was mortified. He just muttered, “OH.” I hope he tells his wife and friends about it. He then had to be reminded of the incident the entire flight home as they were sitting behind us.
Overall, the trip was GREAT and much needed. The family Hughes had a ball.

I plan on calling Annette tomorrow to see if they need to culture Sylvie’s port.

So Sylvie’s medical costs as billed to our insurance company well exceeds 1 million dollars as of tonight.

AFP 8.9!!!!

Princess Sylvie last night.
AFP= 8.9!!!!!
And, as Michael and Dr. Harris are quick to point out, the Yankees are in the World Series!
I’m hyper-organized and over concerned about being fastidious which I guess you could call obsessive compulsive and yet I’m not entirely successful because since Sylvie’s diagnosis last February, I have been particularly consistent in screwing up personal appointments and engagements. So when I send Sylvie off to play dates on the wrong date or time, I’m personally embarrassed and crushed, especially since I’ve most likely listed the correct information on multiple calendars.
That being said, there was no way I was going to screw up school picture day! On one hand, if left to fly her own freak flag, Sylvie might choose her party shoes that look like Chanel flats, leopard tights, a striped shirt and sequined skirt of non-matching colors. All of which, I’m totally fine with because I love that she has such a strong opinion about clothes. Except on picture day. I took out multiple appropriate outfits the night before so that she could still make a choice. Sylvie descended the stairs in a brand new pink and navy dress with matching purse. Her crew cut is about an eighth of an inch short of looking like a pixie cut although you would most likely never cut your daughter’s hair that short unless, say, they had cancer. Sylvie and I practice making faces—Happy, Sad, Angry, Surprised, Scared, Silly and Shy so I am hoping that she used her Happy Face yesterday. When I picked up Sylvie from school, she was thrilled to be carrying the "Sound Bucket: letter F" which I'll explain later.

After school, Sylvie had her monthly check up with Dr. Harris. She was very excited to see Annette and Dr. Harris and she changed into her new pink & red play outfit for the occasion. Michael was meeting us there.
I felt just awful putting the Emla cream on Slylvie’s chest—it’s been a month! She was hysterical. I put some on my arm so I could see what the crocodile tears were about. Nothing. I didn’t feel a thing. In the parking lot of the Reuten Clinic, Sylvie said she wouldn’t go in unless Jette was carrying her. I didn’t see Jette’s dad’s truck so sadly, we carried on. I think Sylvie is learning her letters & numbers by the parking lot levels at the hospital.
There were signs all over the Reuten clinic warning parents of flu symptoms. Sylvie was scheduled to get a thimerosal-free Flu vaccine but the clinic was all out. They asked me to make an appointment with Dr. Rosen for flu and also for H1N1. Injectible. She shouldn’t even be near the flu-mist technically.
I was a little bummed looking at Sylvie’s accessed port. We have come a long way since Michael and I were flushing her port and administering medicine in the middle of the night.
Dr. Harris and Annette came in and were just gushing about how great Sylvie looked. Sylvie is now 26 lbs. and 35.6 inches tall. She gained another 1.5 pounds in the past month and grew another ½ inch. Sylvie quickly got bored of me & Dr. Harris so she and Annette went for a walk down the hall. Sylvie was so excited to show off her moves to Annette. They called Ellen, one of Sylvie’s APNs from upstairs in Ped Onc who came running down to get bombarded by Sylvie. It was pretty cute.
I asked Dr. Harris the million dollar question which I had a hard time even saying aloud. PORT. There, I said it. If they don’t want to remove it, then they’re looking for more cancer. That’s my irrational view. So when Dr. Harris said he expected Sylvie’s AFP to be normal and asked me to call Dr. Valda to schedule the port removal, Michael and I were overjoyed!
We left. Sylvie was pissed because she couldn’t get her mozzarella sticks. Easily remedied by a trip to Target.
By the time we arrived home, there was a message from Annette with the great news that
Sylvie’s AFP is 8.9!!!!!!!!!
Last February, it was over 500,000.
Hallelujah!
We had our own little party last night, opened up our last bottle of Merryvale Starmount 2005 cab and began to plan our first vacation since December 2008.

As for the sound bucket, we had until this morning to fill it with as many things that begin with the letter F as possible. Since we're talking about Sylvie of course, naturally we have lots of Fairies, Fairy Godmother figurine, Flounder action figure, Friend (Samantha) photograph, Family photograph, fork (I left home the princess fork and opted for the Flamingo one), fishing rod from Aunt Cindy & Uncle Adam, a blue flute and the ultimate F item-- the talking ferret stuffed animal that Nurse Tenderheart the clown gave Sylvie in the hospital. I was concerned that Lucy or Lucky might eat it overnight. I was thinking for a while that F stood for F&*$ when I couldn't find a frog, frisbee or feather. Overall, I think it went well and the ferret survived another day in the house of predators.

I made it to Tim's spin class this morning and thought it was a sign that his new mix tape (yes, cassette tape!) contained obscure Jayhawks songs and even Semisonic! Oddly, I was the youngest person in the class and most definitely the only person who could name every single song... Jethro Tull, REM, Jayhawks, Jackson Browne, Semisonic, Rob Thomas and the Smithereens. While Sylvie went to the Hallowen Party at the gym with Michael this evening, I worked on the $ylvie $$$$preadsheet. It's pretty staggering to say the least.

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.