Normal

We are exhausted from trying to have the most normal week ever or at least the most normal week since February! All things considered, a great week. Sylvie went to school for an hour on both Wednesday and Friday. We even spent the weekend at Adam & Cindy's place in LBI !

I don't know who had more fun at school, us or Sylvie. Granted she attended only for an hour but who's counting? After school on Friday, we rushed home an awaited Tracey who is Sylvie's physical therapist and makes house calls. This was our first appointment. I immediately like her better than the other physical therapists Sylvie has seen. It could be that our typical physical therapy appointment lasts about 5 minutes in which Sylvie is forced to stand up, sit at the edge of the bed or hold onto something. While she hysterically cries and says "I'M TIRED!" The end. On the other hand, Tracey spent a lot more time with us where she could see that Sylvie is plenty strong and even more so, stubborn. In fact, Tracey said we should NOT force Sylvie to walk since obviously she knows how to do so. Sylvie, essentially, is holding out on us. Shocker. Not. Instead we need to strengthen her core muscles so that when Sylvie does take that first leap of faith, it will be successful. Tracey lasted longer with Sylvie than any other medical professional home visitor! Sylvie even told Tracy that she can come back. I think it's because she had a bag full of My Little Pony's and even played a game of Candy Land with Sylvie. Sylvie has her own rules and basically, you just have to go along with it until she's sick of playing which is somewhere between 5 and 10 minutes. Since Sylvie's in the hospital this week, Tracey will come over twice weekly starting next week.

Having a routine like school makes it easier to reintroduce basic concepts such as eating and napping. Hopefully Sylvie can go to school again very soon so long as her counts are high. Music class too. Little Gym would obviously not work since she isn't walking. Not to mention, the kid is BORED and it contributes to her demanding to "do something," "go somewhere special" and about a million requests a day to go a choice of:
a). "The Hello Kitty Store...the big one...the new one..."
b). "The Art Project Store" which she now actually calls "Michael's Crafts"
c). "The toy store that has Hello Kitty" which is Learning Express
d). "The Book Store In Town" (Bookends)
e). "The New Big Book Store" (Borders, Ramsey)

I realize that a lot of this is just typical 3-year old behavior which is why we're now enlisting child psychology, rewarding and of course, shameless bribery. We are very conscious of Sylvie's unrewardable behavior. I do not want Sylvie to be one of those kids who as an adult, people say condescendingly, "She's that way because she was sick as a child." Let her be compassionate. Let her want to help kids. Let her want to build homes in West Virginia or a third world country for the needy. Or train to be in the medical field. Or be a professional skiier. But not spoiled rotten and crazy.

For those of you who think we 'make it look easy,' I can assure you that nothing, even on a good day, is easy with Sylvie for Michael and me. She agrees to disagree 100 percent of the time hence the 'word of the week: YES' and so forth. I need to remind Michael tonight once again that we are smarter than her. He felt a little beaten up today.

So about our big weekend! Cindy and Adam invited us to their place in LBI for the weekend. Adam's parents bought it in 1973 which is pretty awesome! We arrived shortly before them early Friday evening having listened to Sylvie bark at us for about 2 hours that she wanted to go home, didn't want to go to Aunt Cindy's, et cetera. I'd say that less than 5 seconds after we got out of the car, she marveled at the house and said, "This is just like our mountain house!" It helped that I stashed a Princess magic art project that I had pilfered earlier from my parent's house in the front seat of Blue car. While Michael unpacked the car, Sylvie and I got down to business until she crinkled her nose, looked up at me, laughed and said that her poop felt squishy. This could NOT be good. I will fast forward to say that for any child to poop up to their armpits is nauseating. For a child who has surgical dissolving tape across a healing incision that runs over 10 inches and another gauze pack covering a previous drainage tube incision, it's a little scary. We got down to business, cleaned her off and stuck her in the tub despite massive protests. When Cindy and Adam arrived, at least Sylvie was fresh and clean and had her first shampoo in over 2 weeks since it was technically the first day that Sylvie was even allowed to bathe or swim since her surgery.

Sylvie has a toddler crush on Adam. It's very endearing and cute. And helpful. Cindy's not chopped liver either. Sylvie LOVES them both and adoringly calls them Aunt Cindy and Uncle Adam. We all ate dinner while Sylvie watched Aladdin and gave Adam a play-by-play. Michael and I were a bit nervous putting her to sleep because of her middle of the night munchies and so forth. Our fear was confirmed around 3 am when Sylvie was wide awake calling for us. It took nearly an hour for her to fall back asleep which entailed me pretending to sleep next to her and Sylvie cradling my face in her tiny hands and putting her mouth on my nose just to check and see if indeed I was sleeping. I crawled back to my bed at around 4 am. Sylvie got up no later than 6:05 am. I told Sylvie that if she was good and ate breakfast, that we would go to the lollipop store which is actually the Pearl Street Market in Beach Haven. As we drove down Long Beach Blvd. and past Fantasy Island, Sylvie pointed at the Ferris Wheel and screamed with excitement. We were pretty thrilled with her enthusiasm. At Pearl Street Market, Sylvie grabbed a bunch of lollipops while we picked up breakfast pastries. We opened up a lobster tank but Sylvie declared they were all sleeping. Last summer, the guys working there took them out and let them walk on the floor while Sylvie and Sammy pet them.

We headed home where Sylvie & Adam graciously offered to watch Sylvie so Michael and I could go for a run. Adam then went surfing on his brand new long board and Cindy & I headed to Viking Village while Michael offered to take one for the team and chill with Sylvie. Later that afternoon, we headed over to an amazing toy store that fortunately had Hello Kitty and then back down to Fantasty Island where we went on the merry-go-round, played arcade games and Sylvie got to eat her signature mozzarella sticks and vanilla ice cream. A great day indeed! We BBQ'd later and had a great night. Sylvie barely slept however. When Adam would check on her, Sylvie would wave back. But at 3 am it was business as usual and at 5:24 am, Sylvie was up and angry. I flat out told her that if she woke up Aunt Cindy and Uncle Adam, there would be TROUBLE. We went out for a walk. No dice. We got in the car and stalked our friend Rich whose house was about a mile or two away. Sylvie was so nuts that I offered to trade Sylvie for their son Daniel and we made our way home. No need to spoil anyone else's fun. Sylvie made her usual demands (lollipop store, art project store) and I said, "No breakfast, no store." No dice. But then Aunt Cindy offered Sylvie eggs and I swear, Michael ended up feeding her 3 eggs. Then of course we had to go to the art store!

We had an awesome time; it was the first time we had traveled farther than Yankee Stadium since early February.

Tomorrow morning, Sylvie has an ultrasound at 8:30 am, lab work at 9:30 am at the Reuten Outpatient Clinic, 10:30 hearing test in audiology and will then be admitted for her 5th round of chemo. Annette called it 'countdown chemo' because we're nearing the end of Sylvie's toxic cocktails. We're thrilled and relieved. We're also exhausted from all this back and forth. In addition, Sylvie is definitely a little traumatized by some of the hospital stuff so I don't want to let her down either. I have solemnly promised "NO NOSE TUBES" and hope I can live up to that. I WILL live up to that. And to all our friends and family, we are really trying to not talk about medical things around Sylvie because she so readily talks about it on her own that we want to get back to kid stuff.

The last two rounds of chemo are the same 21-day cycles as the previous four rounds. Tomorrow, Sylvie will get Cis-platinum and Doxorubicin ("Red Devil"). These are two very serious drugs that cause nausea, vomiting, hair loss, electrolyte imbalance (i.e. Sylvie's crazy magnesium levels), kidney stress, heart problems, hearing loss, neutropenia. This is why Sylvie gets frequent echocardiograms and hearing tests. The other chemo drugs that make up Sylvie's treatment include 5-FU and Vincristine. I am hoping, as always, that Sylvie does not experience bad side effects. And to reiterate, if you or me got these drugs concurrently, we'd be dead.

So through all this, we are trying very hard to be normal. Do normal things. Even if it means carrying Sylvie all over creation and back, holding onto her for dear life as she insists in riding a horse on the merry-go-round when you know it's not a good idea. And pretending to be normal when people stare at Sylvie or at us for letting her eat lollipops and gummy bears at 8 am. They should only know the half of it!

Get Well Pablo

Completely unrelated to Sylvie, but I guess not really, if you've been following this blog, you may recall me talking about Pablo in LA whose parents work in the music business. They were blogging about how they don't want to hear the words "I'm sorry" anymore which I can completely relate to. Instead they have asked everyone to spend 3 minutes a day thinking awesome positive things. I can relate. One of our friends, a cancer survivor, told us in the very beginning to ONLY THINK POSITIVE. This was reinforced by Sylvie's surgeon, Dr. Valda, multiple times. And now by Pablo's parents. I have a favor to ask.

For three minutes today and whenever you can, imagine that we are all joining hands and imagining Pablo at all his great life moments from mountain bike riding with his dad, rocking out at Coachella, surfing in Malibu, his first crush, first kiss, graduating high school, falling in love, attending college, you get it. Let's put positive thinking and all your prayers into full effect. I imagine making a fall pilgrimage to Anaheim to Disneyland, seeing our friends in Los Angeles and Sylvie and Pablo hanging out comparing their war wounds and all the incredibly cool things they've gotten to experience over the past year despite their having cancer and spending way too much time in their respective hospitals. Right now, of course, Pablo doesn't even know she exists, but that's not important. So three minutes. NOW.

(thanks)

Win Win

We brought Sylvie to the Reuten Outpatient Clinic this morning to meet Dr. Valda and have Sylvie's Jackson-Pratt drainage tube removed from her abdomen. We've been measuring how many cc's of 'stuff' fills the clear hand grenade twice daily and it's finally at the point where it can come out. Everyone in the clinic saw either one of the articles on Strides For Sylvie or the TV news piece and were very excited for Monday's race and also flattered that we think so favorably of them.

Dr. Valda was there to meet us and we got down to business pretty quickly. I am glad we opted to wait to do this in the clinic as opposed to his office with Michael and I assisting. It took 3 nurses plus Michael and I to subdue Miss Sylvie. Dr. Valda removed the tape, and honestly the tape might have traumatized Sylvie more than the tube as opposed to Michael and me. When Michael and I saw what he removed from her abdomen after snipping a few stitches we couldn't help but grimace at the 6" piece of porous plastic that had been absorbing Sylvie's excess abdominal fluids. And like that, Sylvie is tube free! Yippee!

We went over to the cafe with the cool fish tank for a special cheesy egg wrap, picked up 50 Munchkins (the mini doughnuts, as opposed to little people) and went to Sylvie's super-fabulous preschool, Montessori Learning Center. We had called ahead so Maeve, Mrs. Brophy, Mrs. Morrow and Ms. Fay were expecting us. I don't know who was more elated, Sylvie's teachers, Sylvie or us! My eyes got all teary as Sylvie painted a picture. For a brief second, she almost forgot that she didn't want to walk and nearly cruised over to Mrs. Brophy. We played, sang Laurie Berkner's "We Are The Dinosaurs" and ate doughnuts. It was cute. Sophia and I talked about our favorite Barbie movies ("Diamond Castle"), Alexandra and I talked about Lucky, Julia and I chatted away too and Kate and I sat next to each other. We didn't want to overstay our welcome today, Sylvie was tired, so we left and promise to return on Friday morning. Yeay. It felt very NORMAL and normal is exactly what the doctor ordered.

Strides For Sylvie thanks

On behalf of Michael and Audra Hughes, Sylvie and all the participants of the Strides for Sylvie team, I just wanted to express my sincere thanks for all your help, support and assistance. The events of yesterday far exceeded our expectations. It was truly a memorable day. Many thanks to all the members of the North Jersey Masters. It was particularly meaningful that so many of the members from the North Jersey Masters dropped by our tent during the course of the day. By all your efforts, the very sense of "community" was on full display at yesterday's race.
Thanks again,
Andy

A DAY TO REMEMBER
All of us know that on MEMORIAL DAY , we honor those military men and women who gave their lives in the service to our country. In addition this year, 2009, on the 26th of May, we acknowledged the road to recovery for the littlest princess in Ridgewood. We also showed our belief and appreciation to an organization that made life for those who love and support Sylvie, a lot easier. The TOMORROWS CHILDREN FUND deserves every dollar that all of you reading this help raise. Starting with Michael, Audra and followed by ALL of YOU, I and my wife give our thanks for all the hard work that went into making it such a memorable day. I for one, shall have a day to truly remember. The attendance of Princess Sylvie herself as the highlight followed by finishing my first 10K Run in about 45 years, before sunset. Next year, Sylvie does the 1 Mile Fun Run.

With love, gratitude and admiration,
Grandpa Lenny

No display of words could possibly describe what we’re feeling right now. The Ridgewood Run and the inaugural launch of team Strides For Sylvie was, in effect, a homecoming for our family. In fact, we are one big team and family united by the fortitude of a Sylvie and all of our support for the Tomorrows Children's Fund in the continued fight to cure pediatric cancers and help those families living with it. We wouldn’t be here today without each and every one of you. A gigantic thanks to our friends who cut their Memorial Day holiday short and schlepped from Montauk, LBI, Spring Lake to celebrate with us. We couldn't possibly have envisioned the incredible turnout, the sheer number of Team Sylvie runners, the activity at the Strides For Sylvie tent, the different teams organized by Sylvie’s teachers and also The Whole Child Center, meeting so many new faces and making new friends. And yes, I ran my first 10K with Michael pacing me at my side and my dad only a few feet behind us. Thank you to everyone for their support in the event.
Audra + Michael

'Twas the Night Before

Very excited for The Ridgewood Run and Strides For Sylvie tomorrow. The day we've all been waiting for! Spent the better part of today prepping for tomorrow. Ann's sleeping over. Cindy and Adam are driving up from LBI VERY early with breakfast goodies. My parents will be here bright and early, too. Caryn is working da tent and guarding the signed Yankees and Mets auction items among others while we run the 10K although I have a feeling that Michael may be the highest bidder for the signed Joba Chamberlain jersey! Andy and Catherine's house looks like a campaign office. They RULE! Tomorrow will be one of the most memorable days of our lives. I can't wait to see everyone who comprises the team Strides for Sylvie. Andy said there are over 100 people running! Thank you in advance to everyone who is has supported Strides For Sylvie and the Tomorrows Children's Fund. I've never run in a race before and haven't run 6 miles in about 8 years. Thank you in advance to those coming in from out of town or cutting your holiday weekend short to show your support. Thank you for organizing your own teams and fundraising events. We are blessed and fortunate to have you in our lives desipite the misfortunes of Sylvie being ill in the first place. This is a homecoming of sorts.

Strides For Sylvie made the front page of the sports section of The Bergen Record today! The headline was bigger than the Yankees article!

I made a very special Strides For Sylvie mix on my iPod, too, featuring:
Keane "Spiraling"
Carolina Liar "Show Me What I'm Looking For"
REM "Superman"
The White Stripes "Fell in Love With a Girl"
Into the Presence "Lovers"
Muse "Hysteria"
Wolfmother "Woman"
Cage The Elephant "In One Ear"
Muse "Time is Running Out"
LFAS "Battleflag"
Low Vs Diamond "Heart Attack"
Muse "Supermassive Black Hole"
Screaming Trees "Nearly Lost You"
Temple of the Dog "Call Me a Dog"
Anberlin "Feel Good Drag"
Kill Hannah "Lips Like Morphine"
Rise Against "Ready to Fall"
Wolfmother "White Unicorn"
Cage The Elephant "Ain't No Rest for the Wicked"
Jack's Mannequin "The Resolution"
Led Zeppelin "Kashmir"
Led Zeppelin "Houses of the Holy"

Jamiroquai "Canned Heat"
Butch Walker "The Weight of Her"
Silversun Pickups "Panic Switch"
Pearl Jam "Alive"
The Jayhawks "I'm Gonna Make You Love Me"
Into the Presence "End Game"
MGMT "Electric Feel"

Very different from Sylvie's birthday mix vol. 3. Sorry my favorites Ryan Adams & Patty Griffin do not make good running music!

Yesterday, Michael and I went to the Yankees game; it was our first time at the new stadium b/c the previous games we had tickets to were all rained out. It was also the inaugural launch of the Tarrytown express train to the house that Ruth built and let me tell you--- 20 minutes direct to Yankee Stadium! It was AWESOME! We thought parking would be a problem in Tarrytown; either all metered or that Blue Car would be broken in. We went through the effort of covering the fancy GPS/stereo with my treasured map of India from National Geographic that has remained in the car for over a year. A seven year-old boy who was in remission from cancer threw out the first pitch and we cried a little. Tears fell in our sushi and avocado salad though-- Yankee Stadium rocks. Then they played on the loud speaker system The Ataris cover of "Boys of Summer" of which I'm certain Michael and I were the only people who knew that. The floor beneath our seats was clean enough for me to put my purse on the ground! It got a little freezing. The stadium is a wind tunnel. Only I didn't want to buy a $100 sweatshirt so we huddled. My sister-in-law Sandi babysat a Tylenol with Codeined Sylvie. Sylvie told her all about wheelchairs, the hospital and seeing mommy and daddy on the television. Kind of wish my kid talked about something else.

We were supposed to go kayaking today in the Hudson but the weather was going to be horrible. So Sylvie went to my parents house for the first time since January-- I think my mom needed it badly. They had a ball. We ran errands while listening to Cage The Elephant. Pretty cool. Black Crowes meets Blind Melon in a wierd way? And the new Silversun Pickups rocks too. I have no idea what they look like but whenever I hear the singer's voice it conjures up the actor Edward Furlong from Terminator and I think a Guns and Roses video.

Our evenings have been filled with TiVo. Gossip Girl finale-- Triumphant! And my latest obsession: Real Housewives of New Jersey. Make that Bergen County. Make that less than 9 miles from our house! You would think that Franklin Lakes is not only in a different county, different state but altogether different planet and solar system where the women have enormous fake breasts. I did see my former hair dresser from high school Victor styling Dina's hair before a Project Ladybug event. I loved it when Dina said during a tennis match with her teen daughter, "I'm sweating my balls off" and that her 'bubbies' are too big to play tennis. One would think their husbands and their business partners would be less than thrilled by the tv show and its exploits because, I mean, allegedly, they have a lot of cash. The show does harken back to my Jersey roots though. I even went to my friend Eric's wedding at The Brownstone in 1994, the day after my dear friend John Franck's college graduation from Fordham. John and I went to the wedding together. We were insanely hung over from his graduation festivities that rendered me crashing on the couch of his friend's apartment on the Upper West Side the previous night after he ditched me at the Raccoon Lodge or Bamboo Bernies or The Bear Bar and went to see Living Colour at The Ritz. I was so green the next morning that my mom didn't have to yell at me when I came home, took a shower, put on a fancy dress and met John an hour later to go to the wedding. It was the first and last time I've ever had a Bloody Mary. It was a beautiful wedding. Eric and John both read PrincessSylvie and are amazed by my attention to detail.

Ok enough nostalgia.

Will Twitter tomorrow!!!!!

Going to sleep before Sylvie demands an egg wrap with cheese around 3 am and our 6 am wake up call to pick up dessert and get ready for the race!

I Am Smarter Than My Child

Our garden has made it 3 days and looks pretty darn great. We cruised over to water our 10' x 12' plot and also Sara's. I admit, we sounded like surly jerks while cruising past another fenced off cube after we noticed their perfect 36" high fence was not attached whatsoever to one corner thus making it a playpen for rabbits. If I had ties on me, I would have fixed it. When we stop in tomorrow, I'll be sure to bring a few.

I awoke at 6 am to Sylvie yelling "Mom, I want to go downstairs!" and recalled a dream from the night before in which MIchael said to me that he made Sylvie an egg wrap at 3 am and watched Channel 9 news. Only it wasn't a dream. So I got up, retrieved Sylvie and he stayed in bed a little longer.

Sylvie's back to bossing us around from the family room couch. I managed to strike an armistice with Sylvie and she was pretty well-behaved while downing her berry-flavored magnesium today. Neither good nor bad but Sylvie's Jackson-Pratt drain (JP drain or Bulb drain which is a drainage device used to pull excess fluid from the body by constant suction that we affectionately call a grenade) is pretty full. Sylvie won't let me pin it to her nightgown or dress for fear of leaving a pin hole in the fabric. Drama queen.

As you can imagine, having little Mussolini barking orders at us day and night (and I do mean ALL night) is exhausting so today I also embarked on a new concept which I am calling "Project YES." I told Sylvie that instead of saying NO all the time, and saying YES instead that we will have a lot more fun. I made her repeat the word YES back to me five times. My very non-yogi mantra for the day is "I am smarter than my child. I am smarter than my child." I realize a lot of her tendencies are merely those of a feisty 3-year-old and that we're not alone in this fight.

Michael and I took Sylvie to get a hair cut which took no more than 7 minutes. I swear it looks better, even though she still obviously looks sickly. And of course she went insane. But then we ran across the street where she picked out two Hello Kitty lip balms in pink and yellow which restored peace in the valley.

We are super excited for the race on Monday!!!

For the Record

Wow! Exciting evening. Michael and I ran over to the community garden and then to the Duckpond for a final 5 mile training run; Sibel got a surprise visit from Cora-Ann Mihalik from Fox/Channel 9 who wanted to interview us for a piece on Strides For Sylvie. Fast forward, quick showers and the Hughes family was camera-ready for our up close and personal interview.

Cora-Ann had hoped to get shots of the family hanging out, playing and having fun but I pretty much assured her that Sylvie would either a). think she was a doctor or nurse and be psycho b). be so tired and therefore psycho. Sylvie lived up to that! I like how when Michael answered Cora-Ann's first question, he said that he owned a natural food store in the East Village. Michael has officially graduated media training 101. Well done. He's back on the home page of Forbes again with part two of his interview with grocery tycoon John Catsimatidis.

Cora-Ann asked us a lot about our experiences as parents enduring a child's illness and of course, about Strides For Sylvie.

Check it out tonight at 10 pm on both Channel 9 and also Fox.

Sylvie, Strides for Sylvie article is online and can be found here

Finally Leaving Today!

We're officially going home today! Dr. Valda said we can go home with the tube, measure it's contents and come back Monday or Tuesday to have it removed. Monday of course is Memorial Day but he's on call so should we feel so inspired post-race, we can meet him either in his office or the ER. Jessica the nurse and I assisted him today when he changed the gauze dressing and if Michael and I wind up meeting Dr. Valda in his office either over the weekend or Monday, we get to be his surgical assistants. Exactly!

Speaking of race day, Monday is the Ridgewood Run and we are so excited to have so many friends and family running in honor of Sylvie and raising awareness + funds for the Tomorrows Children's Fund. I just checked the race website and these are the race times:
8:40 - The Kessler Foundation Wheelchair 10K (10K Course Map)
8:40 - 10K Runners in corrals
8:45 - Park Ave BMW 10K (10K Course Map)
10:15 - Park Ave BMW 5K (5K Course Map)
11:15 - Valley Hospital Womens Mile (Mile Course Map)
11:40 - Valley Hospital Mens Mile (Mile Course Map)
12 Noon - Ridgewood YMCA Fun Run/Health Walk Mile

Strides For Sylvie will have a table at the event in which we will have literature from Tomorrows Children's Fund as well as the Whole Child Center.

Sibel is going to shuttle us back and forth to Oak Street because the race starts at the Ridgewood Y so if anyone is coming from out of town, feel free to come to Casa Hughes pre-race for coffee, etc. Since Michael and I are running the 10K, we're going to leave our house around 8 am. And if I hadn't mentioned it before, my dad is too! I think he could actually win a prize for his youthful age category unless there are some Kenyan seniors running. In that case, it will be a close call.

Sylvie does not want to leave the hospital because it means having her port-o-catheter needles removed. Removing the adhesive tape hurts more than removing the needles which doesn't actually hurt at all.

Luck

Luck is relative, isn't it? Luck didn't get us here. Luck got us a "good" prognosis. But luck did not get Sylvie out of the hospital today unfortunately. Now that we're forcing Sylvie against her will to sit up, stand and move about, the rest of the blood & bile collecting in her abdomen is draining. This is actually a good thing. Dr. Valda said "maybe tomorrow" which I took as "it's never going to happen" however the oncology team suggested we leave the hospital even WITH the drainage tube. They're sick of us taking up a bed in PedOnc. Just when I thought Michael and I had mastered a few basic nursing skills comes the hand grenade-like apparatus connected to a tube connected somewhere inside Sylvie's healing abdomen. Otherwise Sylvie is doing awesome. She ate a massive breakfast, her counts are great. Ellen and Dr. Diamond suggested beginning chemo again next week but we asked for a reprieve until Monday June 1.

Michael and I ran to Stokes Farm in Old Tappan to buy seedlings for the garden today. At some point I am sure our garden will provide relaxation (and nourishment) but for now this is how it goes: Pre-load car with vermiculite, peat moss, change of sneakers and marigolds. Go to hospital. Leave for Stoke's Farm, drive past Dr. Rosen's old office and rejoice that The Whole Child Center is now nearby in Oradell. Take out master garden list and garden plot that I've been drawing and redrawing and show to 14 year-old girl who works at Stokes. Pick out heirloom, Roma and some other kind of tomato plants. Cucumber, Zucchini, Eggplant, Broccoli, Swiss chard, weird lettuces, basil and rosemary. Bought the fattest most purple asparagus I've ever seen. Race to the garden. Quickly mix soil, plant, cage EVERYTHING. Water. Forgot garden gloves. Garden gloves are for sissies anyway. Michael and I had to cut our nails in order to thoroughly clean our hands afterwards. It was a lot of fun albeit not quite relaxing.

Ally is next door to us. She just had her bone marrow transplant today. Her mom has been explaining to me about the procedure and everything that goes with it. It's unbelievable. Sylvie and Ally got to meet for the first time the other day. They are usually in the hospital at the same time except one of them is usually on lockdown with a fever. Ally's adorable. After we forced Sylvie to sit on the edge of the bed and stand up (clinging to Michael's neck for dear life), Sylvie got to hang out with Jette and her sister Nevada today. Sylvie MUCH better behaved in their presence!

Ann and John came this evening so that Michael and I could [BOTH!] go to yoga. It was Michael's second class in a LONG time. Very intense and the teacher focused pretty much on Michael so I didn't have to worry that he might injure himself. He actually did GREAT. Once again, got back in car, raced to pick up dinner and ran into the Turks (i.e. Sibel, Gizem, Sila) also getting food. Back at hospital. Sylvie was awake. FOMO. Fear Of Missing Out. I suffer from that, too. When I had my back surgery, I asked for my black Swatch in the recovery room so I could know what time it was. Instead of sleeping for 24 hours, I watched Dallas, Falcon Crest and then MTV for hours and hours where I saw George Michael's "I Want Your Sex" video for the first time.

I considered asking Pinky to give Sylvie Benadryl but she finally conked out. Sylvie gave Pinky a sticker tonight. That makes up for their first chance encounter when Sylvie clocked her on the head with the Princess "CLICK, You're as Pretty as a Picture" camera. Sylvie's come a long way in 14 weeks.

Sylvie's drainage tube yielded 20ccs today. Highly doubt we're going anywhere tomorrow.

Ho Hum

A little boring around here but boring is good! Sylvie slept lightly last night, waking up every time Johnice came over to check vitals. It was a little jarring hearing this little voice in the dark yell "GO AWAY!!!!!" throughout the night. Mara is our nurse today and Sylvie has been nothing but funny and nice to her. Sylvie's clearly feeling a little better because she hasn't needed any morphine yet, is eating and survived 5 minutes of physical therapy.

Michael dropped off tea for me and an egg wrap for Sylvie early this morning. Sylvie and I fell asleep at about 4 am so I'm not quite sure when Michael ran in. Maybe 6 or 7 am?

Dr. Rosen came by early this morning. It was great to see him and Sylvie wasn't a total lunatic either. He and Karen Overgaard are going to help us find a suitable physical therapy option for Sylvie. I'd bring her to Hackensack daily for PT but the therapist gave me the impression that they are very busy with regular patients. And if there's a location closer to our home, I'd be all for trying that too. Need to check with insurance. Daily outpatient physical therapy will definitely be something that we will have to fight for to get covered. It's not as easy as putting Sylvie on the floor and a pile of cupcakes ten feet away and saying "Go get the cupcakes!" She's a little weak and a lot terrified.

Dr. Valda came in in his scrubs and at least he laughs now when Sylvie screams at him. He said that because Sylvie is still draining reddish brown stuff, he wants to keep the tube in until tomorrow. They'll sedate her a little before removing it. Then we'd be able to go home. I get the feeling the nurses want us out of here because Sylvie is not being treated for cancer right now and they need the beds. Speaking of which, they may actually begin Round Five NEXT WEEK which kind of sucks. We'll see.

Jette and her mom were in here during Dr. Valda's visit. Jette's old enough to think scars and stuff are cool so wasn't concerned about her seeing Sylvie's "Shark Bite." Sharmon, Jette's mom, just did a 100 mile bike race [on a hybrid!!!] last weekend from Babylon to Montauk to raise money for TCF. Just when I thought a 10K race was a lot, a 100 mile bike race-- that's huge!

Continuing with our morning visitors, Linda Rosini came in to check on Sylvie's eating. Sibel had made mac n cheese for Sylvie and she was eating while Linda was reading my little food journal. Then, the Oncology team came and asked what Dr. Valda said. They really don't have any reason to examine Sylvie so Ellen is going to check with Dr. Valda regarding Sylvie's recovery, discharge and continued chemo.

So I was all set to donate blood today and realized that I got a shot last month that prevents me from donating blood. The blood bank wasn't sure last night but when I checked in this morning, and after checking in with Bigelow Pharmacy where the Rx was originally filled, they said ONE YEAR. I'm VERY aggravated but there's nothing I can do about it. This too shall pass. That means there is NO DIRECTED DONOR BLOOD in the Blood Bank for Sylvie right now. I don't anticipate her needing blood for at least a week fortunately.

I think someone passed away in PedOnc last night. I know, you think, we'll it's a cancer floor, of course that happens and I'm sure it does, but I was walking down the hall and saw a police officer being led to a room. A few nurses were staring from down the hall. 15 minutes later, the patient's room was totally empty. I don't have any idea who it was or know their family but was and continue to be very sad about it. It was like, LIFE REMOVED or the DISAPPEAR HERE billboard that appears and reappears in "Less Than Zero."

Positively Needed

This is our 10 x 12 community garden plot that I've named "Fort Apache Ridgewood." Notice the amazing critter-proof fence that we erected (and submerged six inches) yesterday. This year, we're doing it right, baby! And hopefully Sylvie will be enthralled with it and actually eat a vegetable! We may plant some strawberries to entice her a little more.

There's quiet talk on Floor 5-East that Sylvie may go home tomorrow afternoon. Honestly, the pediatric floors from NICU to PICU to PedOnc and General Peds are packed and supposedly Michael and I do such a good jobs as makeshift nurses that it may better serve everyone with our being home. Dr. Valda is removing the drainage tube this afternoon. Dr. Alexander paid us a social call this morning and said Sylvie looks great. He was happy to hear she's going to the bathroom. Today's challenges include walking and eating. Sylvie's scar is a little arresting to look at. I mean, it's only 4 days old and I know it will get much Much MUCH better but even one of the nurses was like, "HOLY SHIT!" It's a conversational piece.

Onto more serious things. Sylvie's hemoglobin is low (7.1) so she's getting another blood transfusion this afternoon which officially depletes our directed donor supply of A+. I am donating a pint tomorrow at noon, my third pint in 10 weeks and looking a little pale! Friends, if you're a match, please donate. Call 201 996 4818 to make an appointment. Thank you.

Chopper to the Left

Yesterday morning, Sylvie moved back upstairs to Pediatric Oncology, Room 10 this time which is next to the helipad. I imagine it will be very loud of one lands but this is not an every day occurrence. Room 4 is empty but I think they finally understand that we are not nostalgic about Room 4 and it's glacier cold.

Dr. Alexander was surprised at how hungry Sylvie is, so he said to let her eat anything under the assumption that she'll more likely just play with her food. Sylvie has been running a slight fever but Dr. Alexander said that's normal post-surgery especially with Sylvie's lungs being compressed. We MUST get Sylvie up and seated and walking. That should be fun--NOT-- but honestly, it's about time she walked again and we're sick of being Sylvie's sherpas! I know how it felt to walk after having a C-section; I can only imagine how much this will hurt Sylvie. Not to mention she hasn't walked in over 2 months. A few friends and family have asked if Sylvie's leg muscles will atrophy--no. I have a friend whose daughter contracted botulism as an infant and was very seriously ill and immobile for over a year. Now as a toddler, she is running just like any other kid her age. Kids are so resilient. It's like they are a different species than us. Just look at pediatric oncology-- Sylvie's drug combination would literally KILL you or me. Look at her recovery-- you or me would just be getting off a respirator. She might be discharged and is eating egg wraps 3 days post-op. You could argue that our life is a slow death but really, if children's bodies are so strong, what exactly do we do besides grow old to make our bodies' systems deteriorate? Maybe deteriorate isn't the right word but a frame of mind afterall. I was listening to a Patty Griffin song called "Up to the Mountains (MLK song)" while driving my mother-in-law's car yesterday and there's a verse that really resonates with me in that Patty Griffin beautiful melancholy kind of way:
Sometimes I feel like
I never been nothing but tired
And I'll be working
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you ask me to

Sylvie was thrilled to come back upstairs yesterday. No offence to PICU but she's very comfortable in her surroundings here and loves her Ped Onc nurse friends. Jette's coming in this week for treatment so I'm sure Sylvie will be happy to see her too. I may enlist Jette to help get Sylvie walking and doing some respiratory exercises. Jette is wise, similarly to Samantha. These girls are very intuitive in a caring way. Sylvie is psychic in a more selfish "what are you going to do to me or for me" kind of way.

I think they will remove Sylvie's drainage tube today. It hangs like a clear hand grenade from her side and collects a little blood and bile.

Michael just saw Katie Holmes & Suri (Sylvie's body double pre-cancer) and Sarah Jessica Parker while walking from the PATH to the store.

Pink Party

The PICU department, 2nd floor surgery wing is ORANGE. Just like PedOnc is YELLOW. The Hughes family rolls PINK however, so Sylvie's bed is adorned with her pink blanket, backup Princess blanket, pink Princess pillowcase from Ann, about 10 assorted girly coloring and sticker books, loose sparkly stickers, Princess purse filled with beaded jewelry and lollipops. It's our own Pink Party. Not to compare to the Pink Party that my sorority had for use fledling pledges back in 1990 in which they gave us pink nightshirts emblazoned with baby blue Pi Beta Phi Greek letters, plied us with cookies & brownies in the middle of the night, sang songs and made pyramid formations. Somewhere in Vermont are photographs that document this rite of passage. Polina reminded me today that our 20 year high school reunions are next year. As if.

Michael slept at the hospital with Sylvie last night so I could run home and take care of boring house stuff, get some sleep and practice yoga early this morning.
Dr. Alexander stopped in early and said to Michael that children's recovery from major surgery is truly remarkable. He said that if we, as adults, had our livers resected, we would still be intubated and unconscious. On that note, he said Sylvie was doing great and then on the spot, Dr. Alexander, Michael and the nurse removed the NG tube from Sylvie's nose and her catheter. That being said, Sylvie's in incredible pain. The incision line looks like either a bad boating accident, a waterskiing mishap or shark attack. You can't help but do a double-take. It's only 2 days old. I'm sure it will get much MUCH better! As much as I want to take a picture of it, I feel like Sylvie as an adult would severely dislike me for it. My parents took a LOT of pictures of me when I had my spine surgery as a kid and I remember being a little irritated by it although much to their credit, they did not share the photos with anyone and just thought I might like looking at the images someday. So, when I raid my childhood bedroom cabinets while Sylvie plays in their family room, I can look back at photos circa 1987 of "me with grandparents," "first time standing since surgery," "incision and surgical tape," "me and doctors William Montgomery III, Serena Hu" and so forth. I'm not sure Sylvie needs a photographic reminder. In fact, I think she needs the opposite. I am hoping that she merely remembers how nice everyone is, all the presents she's received, watching movies in bed and eating cheese blintzes.

My mom came early to hang out for the day which was very helpful so that Michael and I could run over to our CSA garden site and mulch. Michael just got a great book about square-foot gardening that should exponentially improve our skills this season. Then Catherine, Polina and Dina came by for a visit.

Part of Sylvie's recovery includes sitting on our lap or in a chair 2x daily. I don't know who is more fearful, us or Sylvie.

She just missed Harvey the therapy dog. He's a Neufoundland and is easily 200 pounds. I think he's the biggest dog I've seen in my life. I wonder what type of car his owner drives and if Harvey has a ramp to climb into it. I wish my dad was here to see the big hairy beast. Harvey is "not allowed" in Pediatric Oncology which bums me out.

Sylvie's temperature has been creeping up to 99, 100 all day. It goes without saying that I REALLY hope she does not develop any kind of fever. If she continues to improve and there's room, she might go upstairs to PedOnc tomorrow afternoon. Dr. Diamond and Dr. Appel dropped by today to say hi and also remark on Sylvie's great progress.

Sylvie is insanely hungry. Polina brought delish cupcakes from the Magnolia Bakery but I had to ask her not to even say the word "CUPCAKE" in front of Sylvie. Sylvie's allowed to eat and drink clear things which is quite challenging because she doesn't really drink juice or eat Jell-O. I got her to drink an organic banana juice while dodging her repeated requests for "Mommy drink" which is Bolthouse Farms Chai Protein drink--definitely off limits. I tried to get her to play with the green Jell-O but then she tried to feed it to me and all I could think of was a steaming cauldron of animal carcasses being boiled down into gelatin and then reconstituted with green food dye and corn syrup. But being a good sport, I let her feed me a spoonful and instantly made myself sick to my stomach! Jell-O, veal and foi gras would definitely top my do-not-eat list.

I'm going to call my parent's rabbi tomorrow to see if he can drop by next week or Michael and I will go to Wayne. He's visited Sylvie twice before, both times being the first two times I had left her bedside back in the Winter. (Can you believe it's almost summer???). Anyway, back then, I still harbored a lot of ANGER and I didn't want to take it out on him. But, I think he's very wise and a really good guy, so I'm ready to ask him all my questions about G_d punishing small children, Judiasm not being a 'punishing' faith, and the whole praying to the source of her illness thing. I know, these are BIG issues that have been weighing on my mind since February compounded by my being equally scientific and therefore not wanting to discredit modern medicine and science for treating and curing Sylvie. We'll see what he has to say about that! I'm sure he will say something that had never occurred to Michael or myself, which we welcome wholeheartedly.

Tomorrow, a reporter and photographer from The Bergen Record are going to the final training run for Strides For Sylvie at the Duckpond. I'm thrilled that Strides for Sylvie is getting great media coverage, more importantly Tomorrows Children's Fund. The t-shirts are in and look great!
I can't upload photos while using the hospital Wi-Fi but will try to take pictures and upload tomorrow. These sizes are available:
Infant 12 mos. t-shirts
Toddler 4 t-shirts
Womens S, M (Small is very small! Like youth L)
Mens M, L, XL

Good Friday

Michael and I slept like Siamese fish last night on the couch/bench in Sylvie's room. It's a little bigger than the one in Pediatric Oncology although it's a little curved. I seemed to have fallen asleep before everyone else (no surprise) while Michael watched the Yankees game on the flat screen. Mike, the PICU nurse who we met once before up on PedOnc dropped by to check on the score. Then Sylvie realized that her television was being monopolozied and next thing you know, ALADDIN! Michael said that Dr. Percy was here all night long.

We got up at 6 am. Dr. Valda stopped by. Sylvie woke up from her slumber to yell at him. All's well. Next time he comes in, I might arm him with Princess stickers.

Michael and I keep thinking it's Saturday or Sunday. We have no sense of time in this place.

I learned an interesting fact from Sylvie's pediatrician, Dr. Larry Rosen's, blog The Whole Child which is that the Children's Hospital at HUMC is the first "green" children's hospital in the country! I noticed a little framed box of denim insulation in the family lounge with a placard bragging about it, too. I previously noticed a lot of similarities between The Whole Child Center's "green" offices and the hospital, too (i.e. the formaldehyde-free ceiling tiles, the no-VOC paints, the eco floor tiles, etc.). Nice stuff!

Hoping for a relaxing day. There are restrictions regarding visitors (i.e. no big parties in room 2E-8) so we're trying to keep things at a chill level for the next few days.

Adios Cancer?

Adios Cancer, don't let the door hit you on the way out!

Michael and I tossed and turned all night. I was relieved when Sylvie woke up at 6:05 and we could all get up. For the next hour we played a game where Sylvie asked for egg wraps and wafer cookies and we tried to distract her. Honestly, we were excited to leave for the hospital at 7:30 am. Sylvie found my last hidden stash of lollipops in the back of Michael's car and we spent easily the next two hours preventing her from eating them. She was VERY mad.

We checked into the surgery admissions by 8:00 am and Sylvie was still raging mad about the lollipop. She kept asking me to bring her to the cafe for fish sticks (really, mozzarella) and French fries. I lied and said that I ordered them.

I was happy to see our friend Deanna who would once again be Sylvie's O.R. nurse. I first met her when frantically looking for the Emergency Room on February 11th and she's been checking in and checking up on us ever since. Not to mention, Dr. Valda saved her life as a child which counts for something, in fact a LOT.

Dr. Valda came in and got the consistent psycho-Sylvie reception as always. We still had not [ever] met Dr. Frederick Alexander. I was beginning to think perhaps he's deficient in the personality department and he was intentionally staying away from us but I would be proved wrong later when we actually met him and he's a totally lovely guy and most importantly, an amazing surgeon like Dr. Valda.

Heidi from Child Life came up with a make-your-own-tiara kit. She and Siobhan always know just what Sylvie will enjoy. I mean, it's a little predicable (i.e. sparkly stuff, beads, Play-Doh, Princesses, Barbie, Dora, Hello Kitty) but the fact that by 9:00 am, it's readily available is quite amazing to me. Siobhan came up shortly thereafter, too.

Since I took Sylvie to the O.R. last time, Michael suited up in the white paper jumpsuit. Sylvie refused to put on a hospital gown or the fabu-Princess gown that Ann had especially-made so a hippie-diaper-clad and otherwise naked Sylvie was carried into the O.R. kicking and screaming. I had been hoping for a family hug, a quiet moment where Michael and I could tell Sylvie that everything was going to be ok and the bump in her tummy would be officially vamoose but alas this was as good as it was going to get. I sensed a massive wave of emotion and tears so I asked all our family to leave so I could be alone, sit in the big green chair and cry it out.

Michael came out and they gave us a pager, like at Angelo & Maxies steakhouse or any other restaurant with high volume and pagers although we weren't planning on going far enough to need it.

Dr. Valda said surgery would take around 3-4 hours although at 4 hours he said that everything was going according to plan but they underestimated the time and it would be longer. I can't imagine the delicacy involved with two surgeons working side-by-side on a 23 pound toddler for this many hours. Andy came by for moral support (and seltzer for his "wife" Michael) and we ran into Dr. Valda in the kitchen who had just finished up (clocking in at 5.5 hours). Tumor be gone!
Michael then joined us and Dr. Valda said they removed the whole tumor and that it was mostly necrotic (DEAD tissue which is great). There was inflammation on her abdominal wall but not any cancer. They carefully removed the tumor and a safe "margin" around it. The tumor went back near the Vena Cava but ultimately after a few passes, were able to shave off enough cancer-free tissue. In fact, they were able to exceed the minimum margin for removing hepatoblastoma which is great. Sylvie lost a lot of blood, between 200 and 300 cc's which is about 10% of her blood volume.

Fifteen minutes later Dr. Valda said Sylvie was in PICU so Michael and I followed him there where Sylvie was in and out of consciousness. She squeezed our hands and asked for water. Three nurses were working around us and Dr. Stephen Percy who is the head of pediatric critical care at HUMC and vice-chairman of the Children's Hospital (not to be confused with Steven Pearcy who is the singer of RATT) was equally busy examining and monitoring Sylvie. PICU is a very serious place. There is no time for idle chit chat and everyone works incredibly hard.

Dr. Alexander came by and described the procedure and outcome to us in detail as I've listed above. Shortly thereafter, we got a warm and fuzzy surprise visit from Dr. Harris (Sylvie's oncologist who is the head of Pediatric Oncology), Annette Sinski (Sylvie's Advance Practice Nurse in the Reuten Outpatient Clinic) and Linda Rossini (head nutritionist for Tomorrows Children) all came by to visit and talk about Sylvie's amazing response to treatment and surgery.

I'll spare you every last detail but will say this: Sylvie has an A-line or arterial line in her radial artery on her left wrist, a catheter monitoring urine output, an NG-tube that suctions out bile and anything else collecting in her stomach, one port line accessed, an oxygen monitor on her toe, a heart monitor and I'm sure I'm forgetting a few. In in all, the IV pole has 6 bags hanging from it and 10 different lines running through various pumps into her body. They just started calcium and FFP which is fresh frozen plasma to help with her blood pressure and blood-clotting factors. All of this is normal. Sylvie's AFP (alpha feta protein, tumor marker in her case) is 55 which is great and significantly down from over 500K in February. It has a long half-life, too.

We got a peek at Sylvie's incision because she does not have any bandages-- only a dissolving transparent tape. The incision stretches from her right hip high over her navel and a little past it. It's pretty friggin' massive. I had to lift my jaw off the floor when I saw it. I remember the pain in my abdomen when I tried for the first time to walk after delivering Sylvia via C-section. I cannot even begin to imagine the pain this will cause her. I'm cautiously optimistic but there's no way this kid is going to walk until at the earliest, July. My mom had a good idea: Swimming. The buoyancy might feel really good to Sylvie.

She's in and out of sleep. Dr. Valda keeps coming in to check on Sylvie too. Even he joked that when Sylvie starts yelling at him, we'll know she's back to normal.

Even though Sylvie is in PICU and has a nurse's desk immediately outside of her room, Dr. Percy is having Sylvie moved to room that is closer to the central PICU desk for even closer monitoring.

Michael and I are both spending the night here with Sylvie.

On an emotional note, I wonder, since the tumor is no longer inside of Sylvie, does that mean she is cancer-free? Are we rid of this awful disease? I say WE because it affects us all, albeit Sylvie a whole hell of a lot more then you + me. Can we safely say we're more than halfway through putting this awful nightmare behind us? We are confident that we made the right decision to stay at HUMC for Sylvie's surgery. Her medical team and treatment continue to be the BEST BEST BEST. When we talk about Team Sylvie, I know many of you think of our running team, but really, Team Sylvie also extends to the 30 or so professionals at HUMC who have also become our extended family.

Gizmo

We're literally stuffing Sylvie with an early dinner... chicken fingers, fries, sliced avocado, cheese, egg wrap, hummus & baba ghanoush. Washing it down with Chai protein drink cut with skim milk. NO FOOD OR WATER AFTER MIDNIGHT. Sylvie's watching Aladdin right now, mesmerized. My aunt Sharon gave it to her for her birthday and Sylvie has already watched it about 10 times. In a few minutes, we're hopefully cruising over to Van Dyke's for ice cream with Andy, Sammy and Bella. My parents are coming over at 6:30 so that Michael and I can run to the Ridgewood Community Gardens kick-off meeting. I hope no one brings up that our garden was an unruly mess of tomatoes, basil and weeds last year or that Lucky came with us a few times.

Tomorrow morning, we have to be at pre-op no later than 8 am although they said there is a chance of even earlier. Sylvie's surgery is scheduled for 10:30 am and is supposed to be around 4 hours with the two chiefs of surgery working side by side. We'll be in the orange waiting area all day followed by Pediatric Intensive Care Unit for at least 4 days (PICU for short).

Michael is on the front page of Forbes.com today for the launch of a new program called "America's Promising Companies" featuring world-famous entrepreneurs and small business owners. Michael and John Catsimatidis, who is the owner, president, chairman, and CEO of the Red Apple Group and Gristedes Foods (and NYC mayoral candidate) have a "round table" conversation shot on location in our dear friend's apartment right around the corner from Commodities Natural Market. Anyway, check it out at . Expect more clips of it to run in the future. Michael had a great time participating and meeting John however next time he's bringing with him our dear friend and celebrity make-up artist Kevin Posey to powder his nose :-) in exchange for tofu.

Ironically Kevin and I were Facebooking today and I have him on hold to do all of our make up for Sylvie's Bat Mitzvah in 2019.

Last night, we had a few friends and family over to celebrate Sylvie's birthday with a spectacular cake made by Amy Micelli from Ciao For Now in the East Village. I will try to upload a photograph later. Sylvie had a ball. I have an inconsistent habit of writing on match books, date/time/info, and noticed that the one Michael used to light the candles on Sylvie's cake were from a defunct supper club on Ludlow Street called Torch and on the matchbook, I had written: "8/13/01 Five For Fighting media showcase" just when the song "Superman" was taking on a life of it's own. Not to sound corny but my favorite songs continue to take on new meanings, even 8 years later, so it's a little ironic for me.

I don't want to make light of tomorrow-- I'm sure we'll be sitting in silence staring at our fingernails when we're not biting them.

Thanks to everyone for their well-wishes, misheberachs, prayers, prayer circles, healers in far away places, candle-lighting, meditating, fasting, giving up coffee for Lent, Spaghetti for long life!, training for Strides for Sylvie, blood + platelets and of course, modern medicine. Tomorrow is a BIG day for us all.

Happy Birthday Sylvie

Today is Sylvie's Third Birthday!
I just put Emla cream on her chest but as a consolation prize, Sylvie gets to wear her sparkly blue skirt and go to the sticker store AFTER a hopefully quick trip to the hospital for Sylvie's pre-admission blood tests and a possible run of magnesium.

Yesterday, Sylvie also went to the hospital for her Monday labs. Mag was low, 1.2 but better than last week's rock bottom 0.2. Annette asked us to double the current dose which is practically impossible. It means that we have to fill two oral syringes full of pink stuff and hope for the best.

Annette is the advance practice nurse who we work with in the clinic. Like Marianne and Ellen (upstairs APNs), she's very smart, very sharp, I like her. And yesteday, I liked her even more. Everyone in clinic knew it was Sylvie's birthday and they asked permission if they could 'do something.' Of course I said! Sylvie and I ran to the cafeteria where of course, they didn't have an egg wrap so Sylvie opted for a cholesterol-lover's meal of mozzarella sticks and french fries. Sylvie marveled at the fish tank.

We returned, went back into an exam room where lo and behold, Annette and about 10 Reuten Clinic faves including Nurse Suzanne and Child Life social worker Heidi (Siobhan was off yesterday but had the party supplies in advance) came in singing Happy Birthday pushing a cart adorned with a princess table cloth, tiaras, matching plates, cups and napkins. In the middle was a GIANT cake shaped like a cupcake covered with whipped cream, pink & purple sprinkles. Even hard to please Sylvie was overhwlmed! So, it wasn't too bad spending half the day there yesterday.

I am hoping today is a quick in and out.

I wrote in Sylvie's birthday card, among other things, this:
ONE DAY YOU WILL WRITE A BOOK AND CALL IT 'EVERYTHING I KNOW, I LEARNED WHEN I WAS THREE."

American Cheese

You know your life has been turned upside down when your kid asks you repeatedly for cheesy eggs from 1-3 am AND YOU MAKE THEM. I was too tired; Michael went downstairs. And of course, as expected, when he placed the plate of cheesy eggs precisely cut into tiny squares next to Sylvie IN BED, she said, "MMM Daddy, these smell good" upon which she rolled over and fell back asleep.

The good news is that this morning, a hungry Sylvie ate an entire egg wrap (and 2 bowls of ice cream)! She proceeded to have egg wraps all day long. Without fail, we will run out of the one food item that Sylvie becomes transfixed with, today's item being American cheese.

Yesteday afternoon we had last-minute cupcakes and pizza at the Waldwick playground in lieu of a birthday party. Sylvie's doctors said it was ok as long as Sylvie's friends were sniffle-free and that we kept it to a minimum. Sylvie seemed to have a ball seeing many of her friends, and sitting next to her pal Katie ("KK"). I think Michael and I needed to have a moment of normalcy ourselves.

We have to be vigilant about giving Sylvie magnesium 4 times a day orally (as opposed to the NG Tube). Today was our first attempt at staying on schedule and it was a disaster that usually resulted in sticky candy-apple red liquid oozing out Sylvie's mouth, into the crevices of her neck and all over us. Hopefully it will go better tomorrow.

Michael and I brought baskets of bagels, muffins and spreads to both the Ped Onc family kitchen and another one for the nurses and wished them a Happy Mother's Day. Nurses Jessica and Gina were at the nurses station reading the article on Strides For Sylvie when we walked in.

Andy, Catherine, Bella and Sammy came over for dinner, just like old times. I was mesmerized listening to Sylvie and Samantha talk to each other as opposed to a mere 3 months ago.

Tomorrow Sylvie has a 10:15 appointment for lab work. I am hoping I can get the full radiology report from the CT Scans; Dr. Valda said that he can come to the clinic and meet me.

Mother's Day

Welcome to my diatribe. Hope you already read the great news about Sylvie's tumor shrinkage, surgery, et cetera.

So, being a mom is hard. It doesn't matter how you qualify it-- working, part-time, full-time, stay-at-home, married, single-- I'm sure I left out a few. I used to tell myself that if Anna Nicole Smith can be a mom, so can I. For some reason, Michael got a free subscription to Working Mother magazine that arrived right around the same day, April 14th to be precise, I was listening to an NPR program while driving home from the hospital late one night. It was called "College Tells Women Healthy Balance is Key" and focused on a business class at George Washington University that aims to teach young women how to balance their careers with their personal lives. It featured Professor Kathy Korman Frey, Leslie Morgan Steiner who is the editor of the best-selling Mommy Wars: Stay-at-Home and Career Moms Face Off on Their Choices, Their Lives, Their Families Washington Post journalist and lastly, a business major at GWU. It was interesting albeit not groundbreaking yet timely in this economy. I think there have been nearly a dozen NPR stories on working moms, dual-working households, stay-at-home moms rejoining the workforce since mid-April and just in time for Mother's Day. Anyway, you can hear it at http://www.npr.org/templates/story/story.php?storyId=103073298 or in honor of Mother's Day, I'm sure there will be another dozen articles or McNews programs tomorrow.

That being said, I was quite feeling sorry for myself when I was listening to it based on my current situation. This week marked my 12th week on my [FMLA] leave of absence from Razor & Tie. Let me start by saying that every single person at my company has been incredibly supportive of me and my family. I consider myself fortunate in that regard, at least. If I could nominate them for an award about work life balance, I would.
There are countless numbers of women who are involuntarily thrown into situations rendering them on unplanned sudden leave-of-absences, neither here nor there, careers on hold, lives on hold to which life-work-balance has an altogether different meaning. Consider for a moment the moms regardless of where they spend the hours of 9-to-5 who have an ill or special needs child? Life-work balance is hard under any circumstances. Throw in a sick kid and then you really tip the scale.

I was talking to Jette's mom, Shannon, the othe night as we rode in the elevator to the P1 parking lot level while the dads slept overnight at HUMC. She is back at work so her husband and brother-in-law are often with Jette in clinic and on 5E. I told her that I attended two 'work functions' (yes, even seeing a band play at a club on Ludlow Street counts as a work function when your whole company is in attendance) and she asked me what it was like for me. I told her I felt like an imposter or like a patient who had escaped from a psych ward since I had to return to the hospital to sleep over after the show. Then we talked our inability to hear people talk about 'trivial' things. I mean, I want to talk about shopping and fun things but because those things are so beyond my Top 10 Reality List, it's difficult for me to pay attention right now. I said to Shannon, "Yeah, I'm shopping too, shopping for a surgeon to cut out two thirds of my daughter's liver, do you have a promo code or coupon because I think it's gonna be around a hundred grand." On a good day, I could talk about food, cooking, wellness, celebrity gossip, Twilight, True Blood and Gossip Girl all day long. I've gotten back to reading the The New York Times Travel Section and love hearing about our friends' trips although I can't possibly imagine the next time the Hughes family will go on a vacation... or a vacation more than 90 minutes from HUMC which is long enough for the Emla cream to work if we need it.

I wanted to talk about Mother's Day. With all due respect, I can't stand it, but don’t let that stop you from celebrating. I love my mom infinitely and have the utmost love and adoration for both of my grandmas but really, I'm not into Hallmark holidays. Sylvie was 2 days old when we were in the vintage NYU Medical Center celebrating our first Mother's Day together which was also my actual due. Even my doctor, Steven Ordorica, came to visit us on Mother’s Day instead of seeing his own mom, Rose. I was touched. For my second Mother's Day, Michael gave me a very amazing and un-Mother's Day present which was a day alone rock climbing in the Shawagunks with my friend and guide, Paul. My own mom questioned that I wanted to spend Mother's Day alone and that my husband would encourage it. I had a great day. I was still nursing Sylvie and by the last pitch of the day, I was a little top-heavy and in pain, to say the least! For my third Mother's Day, I really want to pay homage to the unsung heroes who are the moms who I see every day at HUMC and who have helped our family over the past three months. I’ll be bringing cupcakes and snacks to them tomorrow morning after Om Nama Shivaya-ing at Shree Yoga.

The moms I have met over the last 12 week are gentle warriors, including myself. We come from all different backgrounds and are all different shapes and colors. Married with one child (like us), married with multiple kids, single parents with at least one kid, working moms on FMLA leaves of absence or now taking time off from any number of different careers to be fulltime caregivers, stay at home moms, moms living on the bench of their child's hospital room or TCF provided off-site housing, families from far away (like Tortola!). And let's not forget the doctors, nurses, volunteers, social workers, countless other hospital employees who make our days brighter as well as the at home nurses and pharmacists who are moms and grandmas. Together they make our lives a little more bearable. When one nurse rubs Sylvie's back for 10 minutes until she falls asleep just like her own child, or another nurse tells me about her own experience with her son being in the hospital, an APN tells me stories about her son who a crappy-eater and Sylvie's age, another one trades breast-feeding stories with me and an oncologist tells me about her willful son. We unite under one roof and one word that is CANCER because we are mothers.

In addition, we’re lucky to have the moms of my working mom’s play group and my non-working mom comrades, too, heck even my single and newly smug-marrieds in the city and Brooklyn ready to catch us whenever we might falter, lose our minds or starve. From organizing meals and blood drives throughout our whole neighborhood, creating Strides for Sylvie, visiting us in the hospital during their limited free time when their own young children or newborns were at home, praying with their families and congregations, walking Lucky and feeding OJ and chatting online with me in the wee hours of the night. I would also say that my brother & Caryn and their whole family are an Army unto themselves! So when I sigh with relief that Sylvie continues to respond great to chemotherapy and throw my fists in the air and scream, “FUCK CANCER,” I know that we are joined by our own militia comprised of those we hold near and dear to our hearts.

Happy Mother’s Day.

Snoopy Dance

5cm x 4cm!!!
Sylvie's tumor on her right liver lobe is half the size as it was when discovered February 11th.
And receded from the portal vein.
All good.
Communal sigh of relief.

Michael took Sylvie for her 3 CT scans yesterday morning. It goes like this: Transport comes with stretcher. Michael lays on stretcher and Sylvie lays down on top of him. Sylvie flails like lunatic as stretcher passes through the yellow wing, into the elevator, down to the orange wing (PICU), into another elevator, down to first floor, through the doors to the main hospital, cruising past the ER, parking in between the other folks waiting to have CT scans. Usually they stare at Sylvie and look away. This time someone tried to make conversation with Michael and he looked the other way. The technician came out of the CT-scan room and asked Michael why Sylvie was there. Cancer. She cried. Other patients waiting in the stretcher queue stared at Michael and Sylvie. This happens about once or twice a week. It's actually a little humanizing seeing the hospital staff cry so I personally don't mind it. I snuck out for my first pedicure of the year across the street! Just think of all the money I've saved in 12 weeks!

Post scan, Sylvie was discharged and we went home.

We waited and waited and waited to hear from either Dr. Valda or Dr. Steele and finally after being treated like orderlies by Sylvie for an hour or so, Sibel took over while we went for a run. In case the doctors called, Michael had his iPhone and my Blackberry in his pocket. Nope. When we got back, Michael called them both; each were taking care of emergencies. Michael said that our decision to have Sylvie's surgery at HUMC is dependent on the scan results. Each called back to apologize. Dr. Steele said no curveballs, regular old resection but that Dr. Valda would call us because she hadn't even seen the report. Dr. Valda's office said he'd call us in the morning.

Michael and I went to the city to see Into the Presence play at Highline Ballroom with Vast (us plus a room full of goths and death metal fans!) but hit a wall of traffic that derailed both our attempt at having a date-night dinner before hand and seeing ITP play. That being said, we made a great recovery and ate at Blossom which is a phenomenal new vegan restaurant (http://www.blossomrestaurant.com/) in Chelsea. Then I ran over to Highline Ballroom before coming home. En route I talked to our friends Michelle and Scott ("Doctor Scott" as he is known to many of our friends and his being a ped ENT surgeon has come in very handy when Sylvie has stuck objects up her nose, among other medical emergencies over the past few years). Anyway they offered some new insight that we had not considered before. I continue to be amazed when Michael and I think we've considered every possible angle and then we hear something new!

This morning Dr. Valda called Michael, once again apologized for not being available the day before. He had GREAT news. There is only one tumor on her right lobe and it's reduced to 5cm x 4cm. It's no longer precariously close to the portal vein, perfectly resectable and most likely only the right lobe. Maybe a little of one of those middle sections. Sorry for my not speaking in medical terms today.

This makes the decision for MIchael and me very simple. Hackensack University Medical Center. Sylvie has to go to HUMC for labs at 10:15 Monday morning. She will be admitted early on Wednesday around lunchtime with surgery scheduled for Thursday May 14th. Sylvie will be in Pediatric Intensive Car Unit (PICU) for 4 days minimum hooked up to all kinds of gadgets and gizmos; she might go up to PICU for another day or two.

The Ridgewood News has a great article on Strides For Sylvie, Tomorrows Children's Fund and Sylvie!

Final Four

Today culminated Sylvie's 4th round of chemotherapy! Hip Hip Hooray! It seems like only yesterday that this whole rollercoaster began. I don't want to say we're halfway through or anything like that but it is a very big milestone for us. Sylvie's counts are rebounding, yeay. To us the numbers with the adjacent letters H for HIGH, L for LOW and C for Critical are unnerving but all "normal" for a cancer kid.
WBC 2.8L
Hemoglobin 9.5L
Platelets 63L (but high considering her chemo)
Magnesium 1.8

Sylvie will be discharged tomorrow afternoon. Michael stayed home from the store today and will also stay home tomorrow or go in very late since he has to pick up mini-cupcakes from Ciao For Now (www.ciaofornow.net). This afternoon, we picked up more salmon and couscous for Sylvie after she ate all of mine last night. Never thought she's like chili-marinated salmon and cous cous with turmeric and curry! And potato chips.

This morning, Siobhan came up at 10:30 so that MIchael and I could slip out and talk to Dr. Valda again. We wanted to review Sylvie's surgery again and ask a few more questions. He knows we are also considering Dr. Dunn. They've spoken several times regarding Sylvie previously. I'll say one thing, Dr. Valda and Dr. Frederick Alexander are equally accomplished as surgeons as Dr. Dunn. They may not work on as many livers as Dr. Dunn but really, they are two of the best pediatric surgeons in the country. Dr. Alexander went to Columbia for med school, did his residency at Harvard and his surgery fellowship at Cincinnati Children's Hospital. Until Dr. Valda told us, we did not know that Dr. Alexander is also a transplant surgeon. I kind of wished I knew that before!!!! In any case, we're pretty confident that Sylvie will stay put at HUMC unless the CT-scans reveal something more complicated or worse than we already know. I don't like correcting old blogs, but I know I previously used the phrase "simple liver resection" because that's what Dr. Harris said but make no mistake, this is not simple.

We will make the final decision tomorrow after we get back Sylvie's CT scan results. Dr. Valda will sit with the radiologists to look at the scans an identify the important stuff.

We thought Sylvie might be running a temperature this morning. The thermometer creeped up to 99.7 and her heart rate was very high which usually is a bad thing. But as quickly as it came, it went. Sylvie needs to take both Colace and Senna today to make sure she poops. The vincristine and the barium that she's getting tonight are like cement. I like that when Millie the nurses aide told nurse Danielle that Sylvie pooped yesterday, Danielle's response was, "No, it wasn't a poop, it was a shart." Who knew that "shart" was a technical medical word! If you don't know what it means, just think about it for a second.

Sylvie holds Carlos's hand when he's taking her vital signs. It's very cute. For the first two months she SCREAMED whenever he came into the room. He just passed his Cardiac exam for nursing at Bergen.

I'm not sure if I've mentioned Sylvie's new friend Jette, who is seven years old. Her wisdom reminds me of Samantha. They met in the Reuten outpatient clinic while making art projects with Siobhan. Jette made Sylvie a glittery Easter Egg and in the past month, has given Sylvie all sorts of Princess and My Little Pony presents. When they're both in-patients, they spend a lot of time together. It's very cute. Sylvie tries to be on better behavior around Jette, too. Jette asked me yesterday if Sylvie gets anesthesia when they put in the NG tube and I crinkled my nose when I told her the unfortunate nope.

Today's insights into the days and nights of Sylvie Hughes:
1). Sylvie asked if she could have a dinner party.
2). Sylvie speaks only in an urgent and demanding tone. It's enough to drive us insane.
3). Sylvie's learned how to adjust the bed.

At 10 pm tonight, the nurses are inserting the awful NG tube into Sylvie's nose in order to administer the barium for tomorrow's CT-Scans. Michael will take her. I did it in March. What a delightful experience. Michael's staying late so we can endure it together.

Cindo de Mayo

The greater Wilmington area website (http://www.visitwilmingtonde.com/) opens up with "Congratulations Joe Biden! Come be a tourist in Joe's backyard! Lodging, Dining, Shopping, Attractions, Meetings, Reunions, Weddings and Sports. Nowhere does it say "Come have your seriously ill child treated at the prestigious Nemours Foundation/ Alfred I. duPont Children's Hospital."

The morning started out great because when I say that Sylvie was hungry, she was HUNGRY. We're talking 2+ bowls of vanilla ice cream, some cheesy eggs, some French toast, French fries and yes, potato chips. I made her an omelette at home and thought, what the heck, I'll make her an organic turkey hot dog. When I showed Sylvie the hot dog this morning, she ripped it out of my hand and shoved it in her mouth. Michael and I were pretty pleased to say the least.

Ellen, the advance practice nurse, told me how much she loves Sylvie and hearing her talk, even if she's in a poisonous mood.

Sylvie's counts continued to be off the map today. When one thing balances, another thing looks screwy. Highlights or lowlights include:
WBC 1.3 C (for Critical but "normal" for her condition right now)
Hemoglobin 10.01 (still low but much better!)
Platelets 108 (still low but up from yesterday's 19)
Magnesium 1.4 (still too low, frustrating)
Phosphorus 2.7 (low)
Trust me there about 15 other things that are either too high or low as well.

The two therapy greyhounds dropped by and Sylvie was pretty happy to have the skinny little dogs sitting in bed with her. I think Michael was pretty psyched too. Dr. Steele came in for rounds and said since Sylvie still has no fever, if the electrolytes get better tomorrow then perhaps Sylvie can go home on Thursday after her Vincristine. I brought up the CT-scans and the barium which are scheduled for 11:00 on Friday which they will figure out tomorrow and let us know. I have a sinking feeling they will want to insert an NG tube overnight which makes me very upset because Sylvie will feel like it's her fault. Or I am projecting that feeling on her. Not sure.

Sibel came around 10:30 so that Michael and I could leave for our 2.5 hour drive south on the NJ Turnpike and 2:30 appointment in Wilmington. I have to admit, I was excited to listen to music other than Sylvie's playlist. We traded Audra Rox, Suzi Shelton and Laurie Berkner for Whiskeytown, KT Tunstall (who played barefoot in my office once!), Keane and Matthew Sweet.

My dad called me en route-- small world--he went to see his internal medicine doctor, Dr. Stewart Siepser. They've been patient/doctor/friend for nearly 30 years I think. Dr. Siepser made the usual small talk, "How's the family" and my dad proceeded to say not quite good. When my dad said Sylvie's name, Dr. Siepser said, "Sylvie? Sylvie Hughes is your granddaughter?" My dad was a little puzzled. Dr. Siepser continued, "Michael Hughes is your son-in-law and married to Audra?" My dad did not know where this was going. And then Dr. Siepser concluded by telling my dad that he went skiing in Vail with him and "his friend Andy" last year. He knew all about Sylvie but never made the connection to me or our family. I only saw him once as a patient myself, when I got dysentery in Los Angeles while on a business trip in 1994 and had to go right to my parents house from the airport because I had a 105 fever and didn't want to stay at my friend Mike's unairconditioned apartment on Pitt Street in the Lower East Side where I was living while looking for an apartment. Dr. Siepser's even running in the Ridgewood Run/ Strides For Sylvie! Like I said, small world.

The drive to the Nemours Foundation/ Alfred I. duPont Children's Hospital in Wilmington, Delaware took 2 hours 15 minutes. We pulled up to the free valet parking which really means "will take long time to get car" and were simultaneously happy and sad staring at the 20 or so Radio Flyer wagons waiting in the lobby for parents to cart around their kids, their belongings and so forth. After eating salads in the lobby, without saying anything to each other, one thing is very clear. This is not Hackensack University Medical Center. It's a pediatric hospital. Lots of kids. Lots of sick kids. Ok, there were lots of healthy kids receiving follow up treatment, but it was a little disheartening. Is it wrong to say that we've grown accustomed to our very own hospital whose lobby looks like the Shore Club?

We navigated our way to the 'blue' section of the hospital, south wing, second floor, special surgery desk where I signed in and paid the $30 copay in advance. The waiting area had the same Romero Britto lithographs as HUMC, TV blasting Nickelodeon, and the usual assortment of parenting magazines. Again, it's not as new as the children's hospital at HUMC which I knew going into it. Michael and I are very conscious of the fabulousness of HUMC and are entirely focused on Sylvie's medical care. Joan, Dr. Steven Dunn's secretary, came out to say he was in emergency surgery and was running a little behind. I heard her whisper to the receptionist about refunding our money and I thought, oh no, they're making us go home, what do we do now? But alas, they just didn't want us to pay anything and we were whisked around the corner to Dr. Dunn's office.

We were seated at the equivalent of a dining room table in his office when in-walked Dr. Dunn still in his surgical scrubs. You can't help but immediately like him. We reviewed Sylvie's CT scans on his computer which believe it or not, we had never actually seen before. Wow is all I can say. Then we talked procedure stuff. Dr. Dunn has done over 30 resections, over 120 liver transplants, etc. He's unequivocably the #1 liver surgeon in the country, transplants or otherwise. He explained to us what they will look for in Sylvie's CT scans on Friday, the concern being how close the tumor is to the portal vein. Otherwise, he said Sylvie's response to the chemo has been fantastic and that her liver after 2 rounds of chemo was potentially resectable then. So we really like him. AND we really like doctors Valda and Alexander who are the chiefs of pediatric and adolescent surgery at HUMC which is one of the top ten hospitals in the country. A good dilemma to have, I suppose? We were then given a tour of the hospital, the surgical floor waiting rooms, PICU (Pediatric Intensive Care Unit), Ped Onc, Surgery and so forth. We were underwhelmed by the patient floors, I have to admit. I'm not saying that Sylvie has to have a private room with a giant flat screen tv (but I mean, what's wrong with that???) however I do get insanely wound-up imagining Sylvie sharing a room in a non-cancer wing with a non-cancer patient whose sibling comes into the room sneezing. I like her being treated like the girl in the plastic bubble at HUMC. Not to mention, let's face it, if Sylvie contracted any type of infection at the hospital it would a). be bad and b). delay our family unit from leaving Delaware for a potentially long time. I mentioned it to Dr. Dunn's associate who seemed puzzled because they do have a lot of patients with suppressed immune systems or hepatoblastoma and it's never been a concern of theirs. We left with a giant decision to make and then drove around the corner to the Ronald McDonald House to see what our family's living quarters would be like. I may not like McDonald's food, their contribution to obesity and Type II diabetes and effects on agribusiness however, Ronald McDonalds House-- it's pretty awesome. We were given a tour by a lovely volunteer named Phyllis; I did think for a second that Michael was going to ask half-joking, if they serve McDonalds food. He did not.

So we have a giant decision to make. Surgery is scheduled HERE for next week and Dr. Dunn is also ready, willing and able. Extraordinary liver surgeons, less then spotless hospital versus chiefs of surgery at a Top 10 hospital who only do 2 of these procedures annually but spectacular post-op medical care 20 minutes from home. Both procedures would be the same. As my rabbi pointed out, you can actually look online and see a step-by-step in case you're curious. I am going to talk to Dana in Dr. Dunn's office tomorrow, to Dr. Steele tomorrow, email Dr. Harris who is on vacation in Europe, and one of the night nurses who we really like and has a son Sylvie's age who had serious surgery here. And don't be fooled, both duPont and HUMC have their own agendas and want Sylvie Hughes hepatoblastoma treated in their facilities.

We drove back to Hackensack marveling how we made it to the hospital in Delaware without getting lost yet couldn't figure out what exit to get off the Garden State Parkway in order to get back to HUMC.