Laurie Has a Pig on Her Head

Sylvie had a triumphant weekend filled with her musical favorites. From yesterday's Audra Rox/ Ziggy Marley concert and hanging out with Audra, the Laurie Berkner Band and Dan Zanes (equal to chilling with the Beatles, the Doors and the Rolling Stones if you are Sylvie) and today's Laurie Berkner concert, I'd say it was a weekend she'll never forget!

Sylvie, Samantha, Catherine, Michael and I packed into Blue car and headed to Town Hall for the 1 pm show. Sylvie & I made a pretty cool poster to give them as a present. I'll elaborate more tomorrow but want to get these pictures up now.

Reservations on the next train to the Moon

I had a hard time sleeping last night and was going to write a little or a lot more about Pablo. Better that Michael and I just talked for a while. Prior to Sylvie being diagnosed, when I heard the word "cancer" I have to admit, the first word that popped into my mind was "death." But by the first week of March 2009, I have never ever thought that again. Whether I'm in the Reuten clinic with Sylvie or the pediatric oncology floor at HUMC I see the beautiful faces of children of all ages, shapes and sizes surrounded by doctors, nurses, social workers, child life workers, music & dance therapists, clowns and other volunteers. Most everyone is HAPPY although you can definitely spot the the 'new' parents and grandparents because like us in the beginning, they're crying a lot. But never ever do I think that any of the kids aren't going to be a okay. Call me crazy. In PICU after Sylvie's surgery, I couldn't help but think about it because whenever I went to the fridge, I was surrounded by pediatric palliative care literature. I had never heard of pediatric hospice either. But it made me think of all the other horrible ailments BESIDES cancer that could harm a child.

So yesterday was a hard day yet Michael and I are so inspired by Jeff & JoAnne, Pablo's parents who continue to be a beacon of positive energy and ray of light for us.

When Sylvie was first diagnosed, I remember talking to my friend Chantal on my cell phone from the hallway and we were both crying. I kept reflecting on a song she wrote called "M" about a terminally ill little girl that begins with "They must mean business/ to say theres nothing worse/ Than to let your precious love child/Leave the planet first" and it's made me cry since I first heard it in 1999 before I met Michael, got married, had a child, who got cancer and so forth. Anyway, Chantal yelled at me like only a friend can and said that was NOT APPLICABLE TO SYLVIE and COULD NOT BE COMPARED and it really clicked. Sylvie was not going to die.

But the first thing I did this morning when I woke up was play it.

Pablo was under the wonderful care at Children's Hospital Los Angeles and I plan to make a donation in Pablo's memory and in honor of his family tomorrow at http://www.childrenshospitalla.org/site/c.ipINKTOAJsG/b.3476085/k.BD1F/Giving.htm

Say Hello to Heaven

Prayer for Pablo
From Pablo's parents: "Dear friends, Pablo Thrailkill Castelaz passed from this life at 1:30 p.m. He left this life in the same way he entered it: beautifully, gracefully and in the loving arms of his Mommy and Papa and dear big brother Grady."

I was just thinking about what a great day Sylvie had today at the Ziggy Marley / Audra Rox show because she got to say hi to Audra, Laurie Berkner & band, and Dan Zanes. And that we ran into friends Beka & Ben and their 3-week old baby Charlotte.

I was about to go to bed and wanted to check in on Pablo when I read his parents note.

Earlier today, I was telling my friend Elizabeth who is a cancer survivor and a yoga teacher how in yoga class the other day, our teacher asked us to think of our one life's desire. Mine was simple: Kids should not get cancer.

And in temple just last night, I was a little angry that all the passages I read never talked about good people or children dying. Only evil people and betrayers. The rabbi gave me a book on Jewish thoughts on Cancer which I promised myself to read this week finally.

Pablo's parents asked all their friends to have one image which is that of LOVE and even though we've never even met, I do imagine them all in their giant family bed huddled up close.

I'm going to bed now with a quick stop to Sylvie's room to kiss her, look at her tiny beautiful face, squeeze her hand and then to huddle with Michael (Lucky and OJ, too).

Shabbat Shalom

Just got back from going to Shabbat services with my dad. The rabbi played guitar during the service and it was very musical. I like that the service begins with a reflection on the great things that happened during the week with an audible sigh to let go of the rest. Although I have to admit, I went there with a heavy heart and some serious praying to do. I was hoping for a little more seriousness, perhaps a sermon in Iran and then a misheberakh (prayer for the ill) for Sylvie and Pablo tonight. No worries. I really enjoy going although it was a bummer that Michael was being nurse to Sylvie and hence couldn't join me. I thought it was a good idea to get in a good word for Sylvie before she begins her 6th and final round of chemo. And Pablo, dear Pablo, needs our prayers right now. For a little boy who we have never met, Michael and I are moved to tears reading his parents' blog. We share so many of the same experiences as being parents of cancer kids however our children's experiences and their responses to their treatments could not be more different. I don't want to disclose it in detail for fear of it sounding like cancer porn but dear sweet vibrant funny Pablo is very sick indeed. So please say a prayer for Pablo tonight, too.

The Hokey Pokey

Sylvie was sleeping last night with her tiny hands clutching my face close to hers. Her face was luminous in the light cast from the night light and I studied her hairless features. No eye lashes (unless you count the 4 still on her left eyelid), no eyebrows. She was born with a thicker head of hair. But looking at her perfect peaceful face up close and personal, it reminded me of an in utero ultrasound image.

Sylvie had an awesome two days. Yesterday, she told me she might let Samantha hold her hand at the Laurie Berkner concert this weekend. The girls went to the playground yesterday and after studying the slide for a few minutes, Sylvie sped down the big slide nearly 15 times with Sibel running back and forth. Then this morning, Tracey came over for some more PT. Sylvie really likes her perhaps because of the stickers and My Little Pony's she brings but I think she really and truly trusts her. Today we had a big break through. Sylvie was kicking a ball, jumping a little and even crawled up a few stairs before seeing me at the top and then starting to cry.

This afternoon, Sylvie was jubilant. She kept throwing her hands in the air screaming, "I feel better!!!!!!" over and over again. We did the Hokey Pokey together (me carrying her) while watching Dan Zanes perform it on the big TV. A big moment. I have high hopes she might take a step or two by this weekend.

I was caught off guard after watching the Zanes "House Party Time" music video a few times so we could see that his orange cat looks just like OJ, Sylvie said to me, "Mom, my eyelashes fell out."
All I could say was, "I know." I was a little choked up.
"Why?" she asked and looked at me. I don't think she's ever asked me "why" anything. Why that? The only reason she knows the word "eyelashes" is from The Sound of Music's "Favorite Things."
I told her that the medicine that's making her tummy feel better is really strong and did it but that the eyelashes will grow back, just like the hair on her head.
"OK" she said matter-of-factly.
Usually she then goes into... "I want my old hair cut back... can we go the hair salon... I want a haircut like Catherine's" but today she seemed content with just talking about eye lashes.

Even Sibel commented that Sylvie's sixth sense is very intense. For example, today she said to me, "Mom, no electrodes on my belly." I mean, how facockta is it that my kid says words like "electrodes," "clinic," "gauze" and "port"? Getting back to the electrodes. I was stunned because tomorrow morning at 8:45 she has an echocardiogram and EKG and I swear I had never ever said it out loud. And yes, she'll need 10 sticky electrodes and then that ultrasound gel. She is NOT going to be happy. Michael is taking the day off to run with Sylvie to the pediatric cardiologist's office and then to the Clinic for labwork. The purpose of the ultrasound is to see if one of the chemo drugs has affected her heart.

Michael did a handstand in yoga today. I was very proud of him. Montse, our awesome teacher, dedicated the class tonight to Sylvie and I felt pretty warm that we were in a room surrounded by people of different faiths who for 75 minutes were praying for Sylvie.

Last night, for the first time ever, Michael and I said the word "relapse" and what it means to us. Hypothetically, she should not relapse based on the "numbers" but then again, she has a one in a million cancer so I don't rule out anything. That being said, Michael told me that he read that in many cases when the kids relapse, they are treated and are totally fine. So let me say it. Relapse does not equal you know what. I pray and pray we never hear that word but I'm sure a lot of our friends and family are thinking about it too.

As if

BONES, STICHES AND MORE! That's a bold-faced headline on the cover of Parents magazine. As if! Like that's a selling point for anyone? Maybe the braces part. But c'mon. I think of a dozen headlines off the top of my head that are pathetic and of course relate to pediatric cancer. Then I think of the Babycenter.com email blast this past spring that discussed common reasons for tummy aches in toddlers. As if! At the end of the day what you need most is a phenomenal pediatrician and I think in that area, we're definitely covered.

I was talking to my friend Max today about Father's Day and she said, "Your kid has cancer so you can do whatever you want!" and she laughed when I told her there were numerous occasions where we pulled the cancer-card since February to which she also said, "So what, your kid has CANCER!" But then I wonder, what if I am operating on a totally different mental level, the "My kid has CANCER" level where everything not-related to my family is a little cloudy.

I gave Michael most of his Father's Day gifts early. I can't handle suspense and was very excited. I bought him a backpack that's outfitted with picnic gear in the hopes that we will soon be hiking and picnicking again soon as well as a fancy John Hardy silver bracelet. Since I was already going overboard, I also got him a piece of folk art from Yard Dog in Austin (www.yarddog.com) from a recent Brad & Sundie Ruppert exhibition called "Love Conquers All." I thought it was very appropriate! Michael is father of the year in my book. Sylvie gave him a cool birdhouse that looks like a mobile home which I bought at the The Seawife antique store in Viking Village on Long Beach Island.

On Father's Day, after yoga we all headed into the city to see Dan Zanes and Friends play under the big whale at the Museum of Natural History. Navigating parking and finding the Hall of Ocean Life was a feat unto itself. The museum was chaos. I saw my friend Jonathan Schwartz who used to be the publisher of Relix Magazine run past us searching frantically for his wife. We must have just missed our friend Pam with Benji & Henry who were right there too! When we finally entered the huge hall and descended the stairs we were completely transfixed, mesmerized and transported into Dan Zanes' world. Sylvie and Michael sat on the floor in front of the stage during the Maritime songs including a funny one about the Titanic. I don't know who was having more fun, Sylvie, Sibel or us. Halfway through, Sylvie who was then sitting on my lap, said to me that she was tired, so I turned her around and she began to doze on my shoulder. I thought of the time we went to see Laurie Berkner play at Bergen PAC and Patrick slept on his mom Jen's lap the entire time. Anyway, Dan began to intro one of Sylvie's favorite songs "Jump Up" (favorite because there is a cat in the video, no less) and dedicated it to her. Sylvie heard Dan say her name and her eyes perked up. We went up front and did some Elaine-from-Seinfeld dancing. I was hoping Dan might notice little Sylvie in her crocheted cap. When Sylvie got antsy we looked at the dioramas of seals, sea lions and walruses. Sylvie didn't know what to think of them because they were neither dead, nor moving, nor stuffed animals or animated. We pretended they were chasing us for a while. Lastly, we formed a human chain for one of Dan's last songs but Sylvie was finito so we made a quick exit. I wanted to say hi to Dan and his manager who were kind enough to invite us to the show but I feared she would be a total nightmare had we stayed around longer. (Disclaimer that I'm working on a new Dan Zanes DVD but even still, I'm a huge fan so I'm pretty honored to be part of his next project). Small world we ran into my friend Stacy in the parking lot elevator with her family!

Michael wanted whitefish salad from Barney Greengrass but the traffic was crazy so we continued downtown and went to Ciao for Now for cupcakes & lunch. Sylvie wanted no part of it, so we drove around the corner to the store, did a supermarket sweep, ran into Pam who had also just returned from the Museum and headed home. Michael and I alternated going on quick runs before the rain kicked in. I sauteed some soft shell crabs for him for dinner (Father's Day otherwise I can't cook them anymore knowing they're alive when the fishmonger cleans them) and called it a night. A great night.

Today I took Sylvie for her labs very early. She'd been up since 5:30, already eaten a huge egg wrap with cheese, "mommy yogurt" which is Mediteranee peach passion fruit and Applegate organic turkey. Sylvie was in an awesome mood and for the first time, very happy to see Carmen and thrilled to see Suzanne, Annette, Siobhan and Heidi. Most imporantly, NO DOCTORS! Her ANC (absolute neutrophil count) is still only 1530 which is too low for chemo and platelets critically low at 39 but both are rising. Sylvie weighs 22.9 lbs which is pretty good, for Sylvie. Sylvie's medicine routine only includes the oral Magnesium and the TPN at night. Yippee! No shots! We ran into Donna and her daughter Ally who was in for a check up. I almost didn't recognize her without hair-- I can't get over that she, Jette and Sylvie all lost their hair at about the same time. Ally is really an adorable little girl with or without hair. They all are.

Sylvie's due for an echocardiogram and EKG on Thursday at 8:45 am so the doctors can see if Sylvie's heart has been affected by all the chemo. Then she's due at the clinic for labs and to have her port needles changed. Ouch. Michael is staying home from work to bring her. Annette said that Dr. Harris wants to begin the final round of chemo on Thursday and asked us to pack a bag. I felt a little like a loser when I asked for the few extra days. I don't think they realize how rejuvenating having a whole week off is for our little family. In addition, we have a home visit on Saturday in regards to another golden retriever that we want to rescue and Sunday's pièce de résistance: the Laurie Berkner concert at Town Hall with Catherine & Samantha which will be a very memorable day to say the least. So for now, Thursday is off.

Tracey the physical therapist came over today with a new strategy: Keeping Sylvie off the couch. They sat outside on a picnic blanket where Tracey got her to stand up. Big deal! This is progress.

We got another delivery of TPN tonight and Michael worked his magic. I am amazed at his ability to put it all together and run the pump. We'll get yet another delivery tomorrow. Basically, when Sylvie gets lab work done at the hospital, Annette and Linda the nutritionist create a vitamin, mineral, glucose balance that best works for Sylvie and it changes every time.

I'm headed to work early in the morning with a pitstop at the Rickert's to see their newborn. Michael has to hang out at home until the TPN pump is finished.

I'm a little bummed that Sylvie can't partake in normal summer kid activities but perhaps in August she can do ballet camp, art camp or just plain camp-camp. A mom can dream.

Nurse Michael

Michael gets my vote for dad of the year. Yesterday, he managed to keep Sylvie on her medicine schedule the entire day and Sylvie loved having him around. In between all the medical shenanigans, he managed to go to yoga in the morning and the gym in the afternoon. Michael said that a guy approached him at the gym and asked about his frenetic workout. Michael didn't want to tell him that he had to be home by three to give his daughter medicine.

When I got home from work, Sylvie exclaimed, "Mommy, Daddy made you salmon!" and somehow he managed to prepare a fantastic dinner amidst the crazy day. The best part though was watching Sylvie eat a third of my salmon.

This morning, I had to run into the city for a doctor's appointment, so Sibel brought Sylvie to the Reuten clinic and I met them later. Sylvie was in the best spirits EVER today, including while at the hospital. And best news of all, Sylvie gained nearly 3 pounds since last Thursday. That's amazing!!! I am thrilled!!! Then, Annette came in to discuss Sylvie's lab work.
Sylvie's ANC count is 140 which is still low, but it's getting better. Her platelets are still critically low so I am really hoping we can get through the weekend without a situation. The counts are still too low for chemo to resume next week which isn't a big deal because at least Sylvie can have a "normal" week. Dr. Halpern came in, also thrilled at how great Sylvie looks. He suggested that we keep Sylvie on TPN until Sylvie's done with chemo which at this rate will be another four weeks at $600/day. I just want to say that it is VERY technical and difficult drawing the two tiny vials into a syringe and injecting into the "big" IV bag. But that's just a test because the next challenge is turning the pump on. It's preprogrammed to run for the allotted time but if it's not assembled EXACTLY the right way it will not work. Michael has become an expert. So has Sylvie.

When we got home from the hospital, Catherine and Sammy were waiting for us at home. Sylvie and Samantha at a little lunch together. It's incredible hearing them talk. They usually talk about princesses.

I'm not sure if I've ever explained that the way some of Sylvie's chemo drugs work is by killing the fastest growing cells in her body (i.e. cancer cells, hair follicles) and thus causes hair loss. Not only has Sylvie lost 99% of her hair at this point, but her eyelashes too. When I kissed her goodnight tonight, I counted three remaining eyelashes on her right eyelid. There are already new lashes growing; I hope they come back just as long. She's been wearing the crocheted flower cap that I got her in March and she looks like a little flapper girl.

We took Sylvie to her friend Nicholas's birthday party this evening but she was a little past prime. I was thrilled Catherine and Sara were there, too because Sylvie really like them In fact, Sylvie only had eyes for Catherine tonight. I forgot to tell Catherine that last night Sylvie said she didn't want to get her hair cut anymore and could she let it grow like Catherine's. She asked if we could go to the hair salon and have them give her long hair back.

Sylvie has the official green light to go to Dan Zanes at the Museum of Natural History on Sunday. Yippee. I hope Sylvie has an awesome time and isn't scared of the giant blue whale dangling above Dan's head. I only hope that if she meets Dan after the show, that she does not say, "Where's Laurie Berkner?"

Adventures in Nursing

Sylvie's home- Yippee!
Dottie the kick-ass home care nurse came over to teach us our latest adventure in nursing: TPN.
Michael has to stay home from work tomorrow just to deal with all of it. I'll be home Friday. Sibel's here thank goodness but it would be totally unfair and inappropriate for us to even ask her to learn the wild ways of syringes, Heparin, pumps, et cetera. This is tomorrow's schedule:

5:00 am Fortaz (Intravenous)
8:00 Magnesium & Vancomycin (Oral)
9:00 stop TPN, disconnect pump, Hep lock, clamp, "etc."
12:00 pm Magnesium & Vancomycin (Oral)
2:00 Fortaz (Intravenous)
3:30 PHYSICAL THERAPY
4:30 Magnesium & Vancomycin (Oral)
5:00 Neupogen shot
8:30 Magnesium & Vancomycin (Oral)
11:00 Fortaz (Intravenous)

This is our rough schedule for the next two days and it's nuts. Luckily Sylvie has turned a new corner and actually tries to help us clean the lines. She tried to help Nurse Melanie today admister her chemo, yikes!

Sylvie is due back at the Reuten clinic on Friday for labs and hopefully her counts will have started to climb. Her ANC was zero yesterday. Today was a little better than zero.

Sibel watched Sylvie (Catherine & Sammy came over to play) so Michael and I could practice yoga. I really needed it tonight. Needed to rest my mind that can't stop thinking that every minute of the day, I am forgetting to administer something to Sylvie. It seems like such a short time ago that we got nervous giving her two consecutive doses of Tylenol which was a rare occurrence and she'd never taken any antibiotics whatsoever until this whole debacle happened.

Ending on a warm fuzzy, Sylvie gained 1 kg in 6 days!!! She weighs 10.2 kg which is 22.44 lbs. Despite being a Hair Club for Men candidate, albeit the cutest HCFM candidate EVER, she really looks great.

We Are the Dinosaurs

Crazy busy day with both Michael and I working in the city and Grannie Annie & Sibel on deck at the hospital. In our absence, Sylvie was a perfect angel. Even when 8 doctors came in wearing the yellow disposable 'lab coats' which Sylvie called their costumes. She recognized Ellen and began chatting away with her. Then Sylvie told Dr. Appel she did not want a nose tubey yet wanted to take her port home with her. He agreed.

Sylvie later asked me if she could wear her port to school. For lack of better words, I said fine.

Tomorrow Sylvie has to have the port needles changed because they need to do that every 7 days, Vincristine chemo and then hopefully home. Her platelets are still low at 33 but there is a chance they will rebound tomorrow. Otherwise she'll get a platelet transfusion.

We'll be joined at home by a home care nurse, hopefully one who we have already met because we know and like them. Sylvie has to continue getting TPN nutrition for 14 hours a day through her port and possibly more Fortaz. Michael and I are experts at this point and no longer live in fear of "hep locks" (Heparin). Sylvie will also need to continue the Vancomycin through the weekend and of course, our friend Magnesium.

Provided that Sylvie's counts continue to rise. we're taking her to see Dan Zanes play at the Museum of Natural History in the hall of marine science on Sunday. Last November when we were at the museum, she was a nightmare and altogether ignored the dinosaurs because I had "forgotten" to buy her the princess stickers at Learning Express. Somehow when she dropped them on the floor, I erroneously mistook that for thinking Sylvie did not want them. Au contraire. After an ill-fated sprint through the museum with Sylvie perched on Michael's shoulders we desperatedly tried to make Sylvie forget about the missing stickers. The highlight of the night for me is when Sylvie ever so sweetly said, "Mommy, I'm done" and then dumped a Magnolia Cupcake face down into the palm of my hand while I was cruising up the West Side Highway en route home. I was ticked off to say the least and had a moment I am not proud of. We were at Learning Express the following morning at 10 am where we got the stickers. I clearly could have handled the situation better and needed a little Yogi Mom wisdom from my friend Pam. Her advice as I recall, was to not go to the Museum in November :-). To this day if you ask Sylvie if she saw dinosaurs at the museum, she goes silent. Hopefully we will remedy this. And just wait 'till she sees Laurie Berkner play "We are the Dinosaurs" in 2 weeks at Town Hall!

We are feeling like dinosaurs ourselves. Lack of sleep is not fun.

My kid has cancer and all I got was this lousy t-shirt

I’m wearing my Strides For Sylvie t-shirt today thinking that in actuality, I have received a lot more than a t-shirt in the past 4 months. Whenever our friends and families comment about ‘coping while their eyes well over with tears or says the dreaded phrases:
1). You look like you’re going to cry
2). How do you do it?
3). Are you sure you’re okay?

I feel like I have to out of my way to declare that of course no one ever asks for their precious child to be afflicted with a deadly disease BUT that we have been able to take from the experience some really positive things that will overall better our lives now and forever. I haven't run that much since the race but still think about that day often. Scratch that-- when I first wrote this, I was in the hospital-- we since came home and ran 3.5 miles in the dark and fog. It felt great.

On Saturday night, we headed into the city for dinner at Eleven Madison Park with Andy & Catherine. I’m so used to wearing flip flops, sneakers and flats over the past 4 months that my four-inch black patent wedge heels were very hazardous. Our friend Julie had arranged for our dinner and I think the entire staff knew who we were and more importantly, that the guest of honor was in Hackensack University Medical Center getting her eight-course meal via an intravenous line into the chest. Look, Michael and I are foodies, say what you will. I'm more of an organic, locavore foodie and Michael goes for the best of the best. He's lucky that his job keeps him in contact with incredible chefs and restaurants and I've always been into food & cooking, even in my studio apartment with the miniature stove and half-size fridge. In the past five years, we’ve had some pretty spectacular meals, what I consider to be two of the best at Chateau Chevre d’Or in Eze and the Ousteau du Beaumaniere in Les Baux de Provence. Not do discount any of New York’s finest either. Michael may have been chided by his friends for not wearing a tie during his Forbes piece with a billionaire last month, but imagine Michael 4 years ago during dinner at Bouley commenting that the waiter should have been standing at attention with his hands behind his back and that it would never have happened at Daniel or Le Bernadin... I digress. Saturday night was a top three meal of all time for me. Catherine and Michael ate my share of the sweetbreads & foie gras appetizers and the next eight or so courses were nothing short of divine inspiration. After three hours, we considered that Andy’s parents were babysitting Samantha and Belle and perhaps we should end our night before the cheese course and truffle finale. Michael and I were also celebrating that his mom was spending the night with Sylvie in the hospital.

As always, our punishment for a great night away from Sylvie is always a hellacious next day. And Sylvie lived up to our expectations. Whenever Sylvie’s counts get low, she becomes the demon-child. Dr. Diamond was on call and he ordered up some morphine and platelets for Sylvie. I was nervous about my night at the hospital with Sylvie yet as soon as Nurse Lisa came in, Sylvie turned on the charm. Aside from the 20 or so wake-ups for loud beeps, oral antibiotics and magnesium, line changes and lab work, Sylvie essentially slept until 8 am when Michael dropped by before work with my morning tea. I cannot believe I haven’t had coffee in 6 months. I enjoy tea but I love coffee.

Dr. Appel is on the floor this week, which means that he is the attending pediatric oncologist on the 5th floor all week. He’s a very sweet and kind doctor. I was surprised to see him make rounds to our room before 8:30 am but happy that Michael and I could talk to him together. He said that Sylvie needs another blood transfusion today and since she hasn’t had a fever since the very first night (which is usually the case) she could technically go home although she is still getting nutrition via TPN and Fortaz antibiotics also through the port. After discussing for a while we all decided the best thing is for Sylvie to go home Wednesday after her chemo. She’ll most likely go home needing TPN for 12 hours at night and perhaps Fortaz 3 times a day intravenously and Vancomycin orally 4 times a day. It’s never easy but this is at least ‘manageable’ and allows both Michael and I to work.

Speaking of which, I’m went home at noon today to do some work while Sibel stayed with Sylvie. Michael arrived at the hospital around 3:30 and Sylvie was playing with Siobhan’s doll Molly. In fact, she fully cleaned and accessed Molly’s double-port and Heparin-locked it. Michael and Siobhan were amazed. Sylvie knows exactly what is going on and is the only toddler on the block who says “No Gauze!”

I picked up Samantha and brought her back to the hospital for a cupcake pizza party in Sylvie’s room. Sylvie asked for her this morning and said Sammy would make her tummy feel better. Samantha brought Sylvie a Cinderella swimsuit for Sylvie to wear when she’s feeling better.

Michael’s mom is sleeping over again tonight so that I can go to work tomorrow. It sucks that in order for me to go to work, either Michael’s mom or mine has to forego work themselves but for now, that’s our only choice. I feel like our extended family is one fine tuned machine working in sync.

I’m psyched to report that Sean from my office returned from lunch today thrilled to tell my friend Kerri & me that he just walked past Rob Patterson whose movie trailer is right up the block from our office!!!!! I’ve worked with musicians and artists my whole life never once losing my cool yet hearing that the twenty-something star of a vampire movie whose target audience is literally half my age is very exciting to me.

Sylvie went from eating organic gummy candy swirls to salmon and rice with the occasional piece of aged gouda cheese! Michael and I keep poking each other with excitement. There is hope yet.

'Round Here

Round here she’s always on my mind
Round here hey man got lots of time
Round here were never sent to bed early
And nobody makes us wait
Round here we stay up very, very, very, very late
Adam Duritz


This lyric crawled into my head last night after Sylvie finally closed her eyes around 11 or so. The reality that “around here” in PedOnc, nothing is what it was before for us. Bedtime? Are you kidding? Pick a time, any time! Rest? Don’t expect it here, even with the world’s best nurses and doctors. It’s usually not in the cards. When you hear a “beep” nurse Jessica will never make you wait. Well, usually. Lastly, “she” -Sylvie and Audra are always on my mind. However, when we are here, it is heightened far beyond as you see the struggles and fight that all the families up here are entangled in, hence I sometimes dwell. I am sure Adam Duritz had no idea of all of this. That’s the lyrical portion of today’s post!

Audra was literally falling on her face tired when she left at 8pm last night. Earlier I jokingly referred to us extras in the zombie movie of our life called “night of the living sleepless parents of cancer patients”. I felt terrible as I sometimes stall her leaving as it really pains me when the family is separated in whatever version of who’s sleeping where when Sylvie is in-patient. It makes a tired-Audra even more tired and in the future this cannot occur. I need to deal! We need to get sleep when possible to have the strength necessary to get through the final furlong of this race to a healthy Sylvie. It is amazing we have each had but one cold the whole time. Must be that organic food!

At 9pm the blitz of syringes, shots and line changes started in earnest. It was the usual protocol of this visit which focuses around TPN to get Sylvie nutrition and a course of antibiotics to treat C diff. Audra is the master of details so I am sure you fully understand these things from her last post. It took Sylvie a full two hours to calm down after all the commotion of the syringes and the shot. It forced me to miss the Met/Yankee game that involved the Met’s outfielder dropping a ball “a seventh grader” could have caught, according to the Yankee radio announcer John Sterling. I couldn’t put it on the big screen (Sylvie still awake) but my i-Phone can stream radio so I heard it. Ah, technology! I am a big Yankees fan but growing up in Flushing, Queens, I have a special place in my heart for the ’86 Mets and ALWAYS pull for today’s Mutts. Oops, I mean Mets. All jokes aside I really do!

From there the night was smooth sailing. Sylvie slept well and even let nurse Gina change her diaper at 4am without asking for me. I only know this because Gina told me at 5:30am when she was drawing blood with nary a peep out of Sylvie which is uncommon. So around here, your always up late but sometimes it can be a-okay.

Rainbows

Follow the underdog
Hold on his collar tight
This city loves a scrap
One day its gonna fight
Sticks and stones and animal bones
Can’t stop me from having a good day on a bad day

Kaiser Chiefs

Listening to satellite radio this afternoon in trusty “Blue Car,” on the way over from our brief “walkabout” that involved running a few errands and a cold-shortened visit to the gym, these lyrics resonated with me. It’s a recurring thought I suppose. Since February 10 we have had many bad days. If you look a little closer there was always some good within there although sometimes you really had to dig. This past week we needed a large shovel! First we had three of four full days in the Reuten outpatient clinic coupled with Audra and me juggling our NYC work commitments. Then comes the prize gold watch of a hospital admit yesterday. The evening hijinx included, but not limited to, nausea, high fevers, reaccessing Sylvie’s port, antibiotic runs, 6 IV fluid changes by midnight, more than a dozen poop diaper changes, and I know I missed plenty. It was this morning when I arrived with a few missed items and red rooibos tea for Audra that I heard the sniffling sounds of a cold that has now arrived at my doorstep as well. It’s amazing Audra hasn’t had so much as a sniffle since January. It takes a toddler to show me that without rain, and we’ve had a lot physically and mentally this week, we would not otherwise have rainbows.

A few Highlights: Audra returned to work! Save the Carl Lewis 40-meter sprint to make the evening train, she had a great day. Sylvie went to her Aardvarks music class! Sibel was so happy and excited to tell me what a great time they had she actually called me. She never dials my number unless a toilet backs up! Amazing day for Sylvie after all she’s been through. There are always good days even in bad days. We try to remember that definite fact even when the clouds are thick. You may be thinking it rained more then 5 inches this week, but I’m thinking about how good it is for our little garden and that we’ve been in the hospital most of the time anyway. It’s okay for you to think, “This rain sucks but I’m glad that I’m not stuck in the hospital either!”
--MICHAEL

Lisa, Sylvie’s nurse last night, came in around 1 am to tell me that Sylvie tested positve for “C. diff.” Huh? Just when I heard it all… “C diff”? I asked her to spell it for me. I was too tired to look it up. I registered that a culture from Sylvie’s poop tested positive, that she needed to take vancomycin orally immediately and that I couldn’t leave the room without wearing a disposable yellow coat and rubber gloves in case I was a carrier. That’s a lot to absorb when you’re half sleeping. I admit, I thought to myself that if I didn’t plan on leaving the room between then and 7 am, that I could just go back to sleep. So I did.
Lisa woke me again around 2:30 am to tell me Sylvie’s temperature was 103.8.
That’s the kind night we had.

Here we go again.

According to Wikipedia, Clostridium difficile [klo-STRID-ee-um dif-uh-SEEL] is a bacterium that causes diarrhea and more serious intestinal conditions such as colitis. People in good health usually don’t get C. difficile disease. People who have other illnesses or conditions requiring prolonged use of antibiotics and the elderly are at greater risk of acquiring this disease. The bacteria are found in the feces.

Every parent I talked to today in Ped Onc has had a hospital stay because of C diff so we are not alone.

Team Sylvie led by Dr. Steele dropped by around 11 am while I was on a work-related conference call. Dr. Steele said that Sylvie’s electrolyte imbalance is totally in line with her chemo and that her counts will continue to drop over the next few days. Even after a platelet transfusion on Wednesday, she will need more tomorrow because it dropped back down to 23.

Linda, the nutritionist, said that the positive culture for C. diff is definitely what has been causing Sylvie to be uncomfortable and not eat. Whenever Sylvie sees a roomful of doctors lately she yells, “NO TUBEY..NO NOSE TUBE” so Michael made all the doctors say out loud to Sylvie, “NO TUBE.” Dr. Steele and Linda had already agreed that Sylvie’s been traumatized by it so they are going to start running TPN this evening.

TPN (Total Parenteral Nutrition) goes right into Sylvie’s port and contains salts, glucose, amino acids, lipids and added vitamins. Linda said this way, Sylvie can get calories and we don’t have to worry so much about getting her to eat.

They also said we can expect Sylvie to be in the hospital until at least Tuesday.

Dr. Harris came by later and concurred. I had just given Sylvie a present that my sister-in-law’s friend gave to her but for the brief moment, we pretended it was from Dr. Harris so that Sylvie wouldn’t go beserk on him. He is way too nice to deserve her wrath. He also said that they had considered admitting Sylvie earlier in the week just for TPN “to fatten her up” because the last round of chemo is going to be rough. If this isn’t rough then I don’t know what is.

We have to keep searching for the rainbows.

Feels Like Home

I have this habit lately whenever something unfortunate or surprisingly crappy happens, I exclaim "Damn Sam!" which is a Ryan Adams song. Not even one of my Top 10 Ryan Adams or Whiskeytown songs but memorable none the less. The lyrics are pretty corny too…

“As a man I ain't never been much for sunny days/ I'm as calm as a fruit stand in New York and maybe as strange/But when the color goes out of my eyes, it's usually the change/But damn Sam I love a woman that rains”

Sylvie’s breathing was heavy last night—like she was panting and out of breath or about to vomit in her sleep. And as usual, she was up all night demanding ‘bubble water’ and ‘Mommy drink.’

Michael and I got up around 5 am and alternated sleeping with Sylvie so we could feel her body temperature rise.

Regretfully, but with no choice, I sent notes to the office that I’d be working from home. Even if Sylvie did not have cancer, there’s no way I would have left her today. And I'm absolutely confident that the folks at my office would not want me there either. Ultimately, Sylvie's intermittent hospitalizations are constant reminders to Michael and me that our family, above all, comes first.

Sylvie's temperature reached 100.5 so we played the waiting game all morning.

Tracey, who is Sylvie’s physical therapist, came over at 9:15 and it was evidently clear that I could not be in the same room if they wanted to accomplish anything. So Sibel, Sylvie and Tracey played games in order to assess her strength and try and trick her to move a little. Tracey and Sibel had Sylvie bouncing on the couch a little which is pretty big progress. There would be no walking today. Tracey and I talked afterwards and once again, she insisted Sylvie is strong and knows how to walk so it’ll just take a little time. Then she asked me, “What’s with the bats in Sylvie’s room?”
“Bats???” I asked having a feeling I already knew the answer.
Tracey continued, “Sylvie told me that Daddy slept in her bed last night and got rid of the bats in the room.”
Hmm I thought…”Did she then bring up the mice?” I laughed and told Tracey that Sylvie is referring to movies “Barbie and the Diamond Castle” with the bat and “The Nutcracker” with the mice or rats.

Tracey also said that Sylvie felt very warm. Her legs and torso were heating up. This time, three thermometers all registered temps lower than 98. I called Annette. She said come in soon.

After applying Emla cream to Sylvie’s port site, I finished up some work and off we went to the “good hospital” according to Sylvie. She was extremely lethargic. We ran into Jette and her dad and Sylvie perked up enough to give Jette a hug. It made my day seeing Jette who is always so cheerful, at least to Sylvie and me.

Dr. Halpern held Sylvie’s hand while Suzanne accessed Sylvie’s port and Annette & I talked about Sylvie’s symptoms. I almost felt like I misjudged and that we should have stayed home. Dr. Halpern initially said that this really could just be symptoms from chemo. Until the labs came back and not only was her magnesium even LOWER than the previous three days, but now her Potassium is off, too. So much that he requested that Sylvie get admitted because it’s easy to monitor and treat her crazy electrolytes while she’s here.

Truth be told, Michael and I were going through extreme measures this week to avoid Sylvie being admitted since I was returning to work but it’s probably the same with her being here as opposed to spending six to eight hours in the outpatient clinic.

I ran home to do some work, jump on a conference call, run to the pharmacy and pack up stuff to bring back to the hospital.

The doorbell rang, Lucky went berserk and as I approached the front door, I could see some kid in a white t-shirt with navy numbers running away. I opened the door and saw a whole bunch of kids hiding in the shrubs between my house and my next door neighbor’s Dave & Diane’s house. I yelled at them for being assholes (sorry Mom but I've been profane since about the third grade) and hoped that Mike Yachimski saw the episode but he was very focused on weeds or shrubs or something like that. I ran upstairs, finished and email and then the Clint Eastwood in me took over. I put on my brown bedazzled clogs, got in my dented, trustworthy blue Pathfinder with 156000 hard miles, lowered the windows and cruised around the block. Sure enough on Waiku, just around the corner from my street, the gaggle of prepubescent idiots were gathered in a driveway. Until they saw me and tore off behind a neighbor’s house. A college kid home for the summer was mowing the lawn so I asked him if he knew them (NO) but to scare the shit out of them and that I have a toddler with cancer at home. These little assholes have no idea who they are f$&^#&# with. I am a fierce, vindictive little person and they are going to be grounded or mowing MY LAWN all summer when I figure out where they live. Michael told me to chillax and because he doesn’t want our house or cars to be egged for the next 10 years. OK so maybe I’ll just make them read Princess books to Sylvie once a week. If any of our friends and neighbors know who they are…

I only have until Friday night Shabbat to hold a grudge plus it’s very un-yogi of me!

Ending on a positive note, I'm lucky to have worked with a few artists who I consider to be very dear friends and in turn, they allow me to be an up close and personal fanatical fan. One of them is my friend Chantal who just played a show at Hotel Cafe in LA this week with the proceeds going to Strides For Sylvie. Over the years, I've come to know causes that she supports and songs she has written about people, including children, who touched her life. When Sylvie was first diagnosed, we talked or cry-talked and debated a song of hers called "M" which is about a little girl and whose lyrics have always brought me to tears. We have come a VERY long way and Michael and I are so incredibly and positively grateful that she allowed us into her performance this past Monday night. I only wish I could have been at the show screaming song requests.

Tiny Dancer

I love Ben Fold's live cover of "Tiny Dancer."

When Sylvie's APN (Advance Practice Nurse) in the Reuten outpatient clinic told me that Sylvie's counts would rebound slower and that she'd ultimately suffer worse side effects from Round Five chemo, I had nothing really to compare it to. And when Sylvie ate a gargantuan meal before and during the beginning of Round Five chemo last week and didn't vomit even once, I thought "that's my girl! Way to go, Sylvie!"

I brought Sylvie to clinic today for labs and Vincristine (chemo drug known for hair loss and awful muscle/bone/joint pain). She weighed 9.2 kg, up 0.1 kg from Monday. To say we have tried forcefeeding Sylvie is an understatement. When Sibel and Sylvie dropped me off at the train yesterday morning, I noticed that Sylvie was noticeably quiet even had her tie-dye sparkly peace sign hoodie pulled up over her head. Hmm. Upon further inspection, I realized her cheeks were stuffed with breakfast! In this case, pizza and cottage cheese. 2 points Sylvie. 0 points Mom. I digress.

Suzanne who is most often Sylvie's nurse in clinic wasn't in today; Debbie was filling in. She's a sweetheart but truth be told, Sylvie's heart belongs to nurses Suzanne and Terry. She wasn't too insane though and Sylvie let me open up her IV line so that Debbie could draw blood. They rushed the lab results while Sylvie and I chased down Siobhan so we could make bead necklaces in the art room while also avoiding the clowns who were busy in the playroom with the rest of the kids. When we returned to the "Octopus" exam room (named after the wall mural), Annette and Dr. Harlow came in. I met Dr. Harlow once or twice when Sylvie was in the hospital back in March. I REALLY like him. He has a separate pediatric practice unrelated to cancer. Sylvie was preparing her defensive strike against him while Annette tried to distract her. Dr. Harlow and I talked for a while about Sylvie's health but he seemed equally interested in her behavior, her sleeping and how Michael & I are coping with all this. I almost cried and hugged him. I continue to be amazed when one of Sylvie's medical peeps suggests something new that makes sense for example when Linda Rosini suggested that Sylvie take Zofran to combat nausea daily in the hopes of her eating better. And today, Dr. Harlow suggested that we give Sylvie Tylenol with Codeine more regularly under the assumption that her craziness is really a reaction to pain. Essentially, give it to her every 4-6 hours UNLESS it puts her to sleep. It was previously explained to Michael & me that kids do not develop addictions when they are given constant low doses of pain medication because there is never a pain/medicate/pain/medicate cycle. I hope that makes sense. Most importantly we do not want Sylvie to be in any pain and it's hard to gauge.

And then the moment of truth. Dr. Harlow walked over to Sylvie and asked her how she was doing. And like that she said, "My back hurts." And like that he gave her the most thorough physical exam she's had in a long time and Sylvie didn't even once pitch a fit. I was amazed. Annette and I kept giving each other side glances.

Shortly thereafter, Sylvie's lab results came back:
ANC (absolute neutrophil count): 140 (critically LOW but par for the course)
Hemoglobin 7.8 (should be over 11)
Platelets 10 (Critical; should be over 135)
Magnesium 0.8 (Critical; should be over 2)

And with that, the day got much longer. I called Michael and he planned to take an 11:30 train to the hospital so that I could return home and do some work. It's my first 'work from home' day since I'm back and I really don't want to screw things up.

Michael and Sylvie were at the Reuten clinic until 6 pm when they closed. Sylvie got Vincristine chemo, platelets, blood, Zofran. They ran out of time otherwise they would have given her Tylenol with Codeine or morphine. Sylvie came home with a brand new Barbie "Sea World" doll set (I'm perplexed by it) and a pink purse filled with pink on top of more pink on top of even more pink hair accessories which is ironic because I think she may be bald very very soon. She loves nurse Terry because she is like the aunt who spoils the kids rotten-- she always gives Sylvie presents. Sylvie talks about her at home, too.

I was definitely thinking that perhaps I returned to work prematurely or that two days in the city might be a little rough for the next few weeks...let's see how Friday goes. Sylvie has to go back for lab work and Annette told Michael she'll probably need more platelets. She also said upon leaving, "WATCH HER TEMPERATURE" so we are being very VERY careful.

Michael and I went to yoga tonight, picked up salads at Amano (the best grilled artichokes ever) and settled into The Real Housewives of New Jersey. This week's episode is called "Casinos and C-Cups." There's a moment in it where Theresa is getting implants and it sounds like Elliott Smith's "Waltz #2" and I just cannot possibly imagine his estate licensing the song to this show.

Tomorrow I'm going to work [in the city]. Tuesday was great. Having left work so abruptly, my desk was a time capsule. I had Sean throw out all my junk mail and heavy metal magazines as well as remove all traces of the office mascots. Mice. I was ready to get busy and work but as you can imagine, there were lots of hugs and questions about Sylvie. Michael picked up baked goods from Billy's Bakery, too, so I mean, getting me and the first batch of cupcakes on Tuesday didn't suck! The day was great. Knowing that Sylvie had a FANTASTIC time at Music for Aardvarks and multiple playdates with Sammy made it even better. Nearly missing the 6:23 express train home was even worse than usual. I was prepared to pull a Larry David if they didn't let me on board. For the record, I am usually the last person on the train and running for the wrought iron gate at 6:22:45.

Tracey, the physical therapist, is coming to the house at 9:15 am. I'm curious to know her take on Sylvie's not-walking status.

The Sun Will Come Out Tomorrow

Today is the last day before I return to work on a part-time basis so I had been working on a great big list of things to do and take care of that included everything from cleaning my still wintry bedroom closet and overflowing kitchen drawers, prescription refills, perhaps a trip to Abmas Farm or Van Saun Park with Sylvie and perhaps even yoga or a massage.

Instead I sat in a chair at the Reuten clinic from 9 am until 4 pm while Sylvie got lots of fluids, magnesium (her level was dangerously low at 0.9) and Zofran (anti-nausea medicine) all intravenously. After the hellacious weekend, we came to the obvious conclusion that Sylvie isn't feeling well.

When we exited the elevator from the parking lot, I ran into Dr. Diamond, one of the oncologists. He seemed concerned and after listening to my complaints about my little dictator peppered with a few legitimate medical concerns, we reviewed Sylvie's very intense chemotherapy regimen (remember: the combination of Cis-Platinum, Adriamycin/Doxo, 5-FU and Vincristine would KILL an adult) and he said that she is most likely just feeling like crap from it. Makes sense.

We checked in, payed the $30 copay up front and went to Carmen's office for the moment of truth: THE SCALE. Sylvie sits on it because she will not stand up. Last Monday, Sylvie weighed 10 kg. Seven days later: 9.1 kg or 20.2 lbs. That sucks. Jette was there with her dad but Sylvie was in a bad way and pretty unfriendly which breaks my heart because Jette is unconditionally filled with love for Sylvie regardless of how she feels. Suzanne led us into an exam room where she and Annette immediately opted for fluids because they'd clearly make Sylvie feel better. Dr. Harris came in with Annette a little later to review Sylvie's lab results which to no surprise showed low magnesium and dehydration. I told Sylvie flat out that if she was nice to Dr. Harris, I would buy her a present. A very special present. He did his freaky deaky dance and you could tell Sylvie wanted to laugh. She has no idea that her doctor possesses such greatness. He's concerned about Sylvie's lack of appetite and even mentioned the NG tube which freaked me out as much as Sylvie. Michael and I have promised Sylvie NO TUBEY so I flat old told Sylvie that if she doesn't start eating, we have to do the Tube. She asked for a bagel. She took tiny nibbles of cream cheese. I told her it wasn't enough. She asked for a pizza. Siobhan and I wheeled Sylvie and her IV stand to the cafe where Sylvie proudly ordered a margherita pizza. Upon return, we played Sylvie's version of Candyland while I yelled at her to eat. Sylvie ate about 1/2 a slice. Two Barbie movies later, Linda came by to talk about nutrition. I was scared she'd bring up the tube and was pleasantly surprised and relieved when she said that kids cannot tell the difference between:
1). tummy ache
2). constipation
3). hunger pain
4). nausea

And that in most cases, since we are dealing with cancer and chemotherapy, it's the nausea that gets the kids to stop eating and unable to verbalize it. Hence, she proposed a daily dose of Zofran for at least 2 days to see if that helps Sylvie get her appetite back.

Michael took the train to Essex Street/Hackensack at 4:15 which was really perfect timing for us. He had a box of mini cupcakes from Ciao For Now and Sylvie was elated. We went to the Disney store and she was even more excited. We went to Abercrombie & Fitch so Michael could buy new shorts and Sylvie was getting funky to the AWFUL Eurotrash music. And Borders to look for a new Barbie coloring book.

When we got home, Sylvie ate some dinner and we felt victorious. Michael and I ran to the gym and to the garden. Upon return, Sylvie demanded Salmon so Michael had to run out to buy some. Slim pickings when you're looking to buy fresh fish after 8 pm on a Monday night. In the meantime, Sylvie has a doggie medical-play kit that an organization named Eitan's Hope gave her-- a perfect gift in all seriousness although Sylvie has given it a lukewarm reception. Until tonight. There she was giving her stuffed dalmation puppy shots, checking it's ears, listening to its heart and clipping its nails. Repeatedly. And when OJ the cat came by to pilfer salmon from Sylvie's plate, he too got a physical exam from Sylvie. He is a VERY patient cat. He got lots of salmon. He and Sylvie weigh nearly the same.

I told Sylvie it was time for bed and like that, we went upstairs, brushed teeth without a fuss, read one book and lights out.

A great ending to a seemingly crappy day.

Tomorrow is a big day for Sylvie and me. Me because I'll be working in the city, a nervous wreck and have to answer, "HOW IS SYLVIE" at least fifty times. Sylvie has a big day because she'll be without me for the first time in over 4 months. She is also going to Music for Aardvarks and hopefully will have a normal day and eat a ton :-).

Today was a good day

Just waking up in the morning gotta thank god
I dont know but today seems kinda odd
Today I didnt even have to use my a.k.
I got to say it was a good day.
-- ice cube

(I just told Audra that she should write technical manuals for firearms after quizzing me on automatic weapons. I digress)

So, maybe we need to reevaluate what a good day is. We didn't have to use an AK-47 for example! In all seriousness, today during the TCF Family Day at Camp Spring Lake in Ringwood we yet again realized that even on a bad day we have much to be thankful for. The day got off to a typical start. I slept in Sylvie's bed because essentially she clutched my arm so that I could not escape and retreat to my room. Sylvie demanded an egg wrap and rejected it because she decided that 'orange' American cheese is bad and that yellow American cheese is better only she had eaten the last slice. I cringe at the mere thought of American cheese and consider myself to be a Francophile cheese snob so debating the preferred color of American cheese with Sylvie is just plain ridiculous. Audra and I went to yoga to OM our way through forgetting about the previous day. We arrived home and got ready for the TCF party and negotiated with Sylvie that we could go to both the bookstore (Bookends, thankfully open on Sundays) and cupcake store (Wyckoff Bakery) en route. Bookends was the usual retail debacle where Sylvie asks for one thing and a second later in the car declares it's 'no good for me' At the bakery, Sylvie picked out a vanilla cupcake with a plastic butterfly on top. Audra got a red velvet even though she said the last time they taste nothing like red velvet. Sylvie decided Audra's was better. Some car disaster happened and somehow Audra ate the red velvet cupcake sending Sylvie into a tailspin. I made the mistake of saying there would be lollipops and ice cream at the party (what was I thinking?) so when we got to Spring Lake, Sylvie was on a mission. To make us miserable. We immediately began a search for Jette and her family because they always make Sylvie feel better and we love hanging out with them, too.

On a positive note, at least Sylvie was well-enough to be there. Audra had a discussion with one of the Advance Practice Nurses regarding her own daughter's reaction to seeing two girls, one with a prosthetic leg and another walking on crutches and missing her leg. She was quick to point out that even though she does this for living, her children don't always react in kind. Sylvie and Audra ran into 'Nurse Katie' which made Sylvie happy for a second. She wouldn't eat a thing, demanded food items that were not there. She felt a little warm and Audra bet 75% that Sylvie would be in the hospital within 24 hours. She hates making negative bets but it seemed likely. Sylvie's definitely a little off. Something is hurting. It was so hot out that we didn't want her to dehydrate (and then get a fever and land herself in the hospital for 48 hours, especially when Audra's going back to work Tuesday). Sylvie played an amazing game where she threw bean bags at objects and I was pretty impressed with her hand-eye coordination and throwing arm. It was Sylvie's warm fuzzy of the day. That and spin-art, her newfound obsession. Audra and I marveled at the pool, rock climbing wall (Audra really wanted to climb up in her inappropriate Ed Hardy sneakers), paddle boats and kayaks. We spent time with Dr. Harris, too. But we had to leave within 90 minutes because Sylvie was really inconsolable and I didn't want to ruin Jette's family day either. This would be an amazing place for Sylvie to go to camp. Audra said wherever Sylvie goes to camp now is where she's going to be a counselor when she's 16 so when we cross that bridge, it's a big decision! I didn't go to camp so I reallly don't understand what she's talking about.

Know what kind of sucks-- Jette and Sylvie are nearing the end of their treatments yet NOW their hair is falling out. Jette got a super short hair cut and I'm not sure yet if Sylvie will need it. Audra had to change the linens and Sylvie's clothes several times because of the shedding. But I mean, that should be the worst of it, know what I mean? We are not complaining.

I called Audra's mom earlier in the day to see if she and Audra's dad could relieve us for an hour because we really needed a Time-Out ourselves. Dinner time was it's usual disaster. Audra tried to explain to Sylvie and then me her frustration in wasting so much perfectly good food, less tragic because of my business then again wasting food is not something I take lightly either. Audra was a little unraveled and I found both her shaken up and Sylvie in hysterics on the couch in the family room. If there was ever a need for a vacation, my friend this is it. Calgon take me away.

This weekend was really hard and the bright spots are what we need to focus on as it will likely not get much easier over the next month. Yet we are so grateful that this is temporary. This weekend really gave us even deeper respect for parents whose kids have special needs that require this kind of compassion, selflessness and attention 24/7.
-Michael (edited by Audra, of course!)

Insane in the Membrane

Trust me when I say that Michael and I feel badly when we harbor negative feelings towards our sickly daughter but she drove us INSANE today. 1 part "I'm feeling like shit from chemo" and 2 parts "I'm a strong-willed 3-year old" and there you have Sylvie. From repeat trips to the Morning Glory/ Hello Kitty store, two trips "searching" for stickers (that I hide in the trees when we go exploring outside) and preparing chicken fingers, fish sticks, egg wrap, french toast, toast with butter, macaroni and cheese, both American and mozzarella string cheese AT THE SAME TIME only to have Sylvie ask, "Can you make me the bunny macaroni and cheese?" followed by "I'm not hungry." When I returned with the toast for her to butter and got the 'not hungry' response, please don't hate me but I told her that I would stick it in her mouth if she didn't eat it on her own accord. Tears welled, cries for "Daddy" ensued and I had to walk away. As it turned out, Michael had been employing a similar tactic alternating with threats of sending Sylvie to her room. It was at this point we gave Sylvie a dose of Tylenol with Codeine. She ate half a slice of cheese and two bites of French toast. I don't know who needs the psychologist-- her or us! (Actually I've repeatedly asked about all this behavioral stuff and we've been assured we're handling it the 'right' way and that once Sylvie is healthy and back on a normal schedule, it should right itself except for the age-appropriate stuffs. Marianne, one of the APNs at HUMC did say that if the terrible two's were terrible, then the three's would be worse. Damn.

My cousin Rhonda brought over dinner last night with the promise that Michael and I would get to eat together and she would entertain Sylvie. I have to say, she is a charmer and Sylvie was totally enthralled with her. It was adorable listening to Sylvie say Rhonda this and Rhonda that while they made magic princess pictures. Rhonda gave Sylvie three glitter lip glosses which have not left Sylvie's little hands all day. She's clutching them in her sleep right now. Sylvie looked like a beauty queen all day with her shiny glittery pout. Even at Whole Foods this morning sometime around 9 am which brings me back to today's festivities.

I ran into my friend Jeanne at WF when we were trying to coerce Sylvie to eat anything. Gelato (thanks Mom for the freebie coupons!), egg and cheese on a croissant, you name it. Sylvie wouldn't eat a morsel and was pretty hostile to Jeanne (sorry...). There was a mom at the adjacent table in the cafe whose well-behaved daughter was dutifully eating cubes of cheese and grapes while staring at Sylvie. Michael barricaded the gelato so that the little girl wouldn't see it and then ask her mom for ice cream before 9 am. The mom GLARED at Michael obviously thinking what kind of parents are we to let our daughter eat ice cream before 9 am. Then she looked at skinny Sylvie with her thinning hair and made the obvious realization upon which she looked apologetically at us for the rest of their time in the cafe.

I think Michael and I need to end our day thinking about the 'warm fuzzies' especially when it's been filled with so many 'dim gloomies.' These are words my college roommate Jenny coined during our year living in the Pi Beta Phi sorority house on Langdon Street and before we went to sleep at night, we'd recap the day by listing the warm fuzzies and dim gloomies. You can never end the day on a dim gloomy. So from now on, Michael and I will not either! He's actually pointed out that my parent's rabbi during Shabbat services recaps all the GREAT things that happened in the prior week and that we should too. So here goes the warm fuzzies of the day and I will only briefly mention that Sylvie's constant harassing of Michael resulted in his screwing up his picks for the Belmont today (wink, wink):
1). Michael and I made a great corn and basil tart together
2). Sylvie "helped" make lemon cupcakes in ice cream cones and a birthday cake for our friend Mark
3). Our garden, after 4 days of rain, looks AMAZING
4). We made our first salad with bounty from our garden!
5). Jen brought over yummy chips, salsa and guac
6). Sylvie got a BATH
7). We got to celebrate our friend Mark's birthday
8). I got to hold baby Salvadorable until Sylvie got jealous
9). We had two uninterrupted hours to hang out

Tomorrow is the Tomorrows Children's Fund family day. Looking forward to being outside and maybe even getting Sylvie into a paddle boat!

The Pope of Greenwich Village

Michael and I are watching The Pope of Greenwich Village. It's my first time seeing it. Eric Roberts looks like a less-attractive Kirk Cameron. We're splitting a Cozy Shack chocolate pudding.

Sibel watched Sylvie tonight so we could see my friend's band, The Slewfoot Project, play at Cool Beans in Oradell. The band sounded great and we are truly appreciative of the fact that proceeds of their CD are going to the Tomorrows Children's Fund. We had a great time and ran into friends Dina and Dan who I haven't seen in a long time. They had read our wedding announcement in the New York Times from 5 years ago, and of course, any number of the articles on Strides For Sylvie.

The phone rang early today; it was Ellen from Tomorrow's Children calling with the results of Sylvie's AFP blood test. The AFP level is the "tumor marker" and to recap, back in February it was over 500,000 which indicated BAD F$&#^@& CANCER. The recent level is 12.7! This is GREAT NEWS.

AFP by itself is not diagnostic so Michael and I will not be getting AFP tests any time nor should our families or paranoid friends. Tumor markers are used primarily to monitor the result of a treatment (e.g. chemotherapy). If levels of AFP go down after treatment, the tumor is not growing. I tried to find a 'normal' AFP level-- I think 'normal' is under 8 but there are people with ranges nearing 20 who are also fine. Sylvie will have her AFP level checked monthly in the future.

I met up with my girlfriends who for one reason or another are not currently working and it was GREAT to share stories about our kids because it felt "normal." I know much of Sylvie's willful personality is just her being a three-year old. I found solace in hearing that some of her little friends who I think are perfectly angelic have their moments too! I felt a little left out hearing about all the activities that Sylvie used to participate in with her friends, but know that in no time she'll be running around again like crazy.

My parents came over this afternoon to give us back Lucky dog. They swore Lucky only had steak once :-). My mom, whose catch phrase used to be, "Got any gossip?" told me that I graduated high school with Dina Manzo (aka Claudine) from The Real Housewives of Bergen County! Just when I swore off my 20 year reunion which would be next year, there indeed is reason to attend!

Sylvie was in a pretty fragile mood all day. It was the first time in over 3 weeks that I had to give her a Neupogen shot and I felt just awful. Sylvie says several times a day, "No leg stickers!" and was trembling after I pushed the plunger on the syringe. Sylvie got as a present a puppy medical kit and ironically gave the tiny dalmation a shot this morning.

Michael and I went for a run at around 5 pm. it was my first long run since the Ridgewood Run and man, I need some more motivation to get through it! And new running shoes; I haven't bought a new pair in nearly 4 years. Michael is thinking about putting together a Strides For Sylvie/Tomorrows Children's Fund team to race in the New York City Marathon this November. If anyone is interested drop Michael a line. Um, I will not be on this team but his mom and I will be at our usual hangouts in Williamsburg and Harlem holding up signs and cheering on the runners.

Four Seasons In One Day

"Four Seasons In One Day" is one of my favorite Crowded House songs.
Four Seasons In One Day
Lying in the depths of your imagination
Worlds above and worlds below
The sun shines on the black clouds hanging over the domain
Even when you're feeling warm
The temperature could drop away
Like four seasons in one day
...finding out wherever there is comfort there is pain
Only one step away
Like four seasons in one day

Of course lyrically it has nothing to do with a toddler battling and beating cancer. But the title sums up the range of emotions Sylvie runs through on any given day. Until this morning, Sylvie had been in an amazing mood but our punishment for going out last night and sleeping at home while Grannie Annie slept over was a day of absolute torture. (Note: Sylvie had a ball with her Grandma and even slept through the night).

I was thinking last night about an evening last summer when we were up in Vermont. We decided to go to Burlington for the evening. Or make that, Michael thought it was a bad idea to go because Sylvie has never been good when it comes to dining in public. But I insisted and so we went to my most favorite college town after Madison. Things were looking pretty good on Church Street. There was a street musician playing Sylvie's greatest hits and Sylvie was a dancing fiend. When he began to play "Favorite Things" from The Sound of Music, Michael and I thought we hit the jackpot. But all good things must come to an end and we attempted to have dinner at an Italian restaurant however Sylvie's great mood had turned rotten and we essentially took turns eating in the big red booth alone while one of us stood outside holding Sylvie. So as you an see, Sylvie's behavior hasn't changed that much since the bad news bear called cancer entered her life. And we're really homesick for Vermont and miss "mountain house" as Sylvie affectionately calls it.

Last night we witnessed greatness: Patty Griffin, Emmylou Harris, Shawn Colvin and Buddy Miller each performing their respective songs with each other lending backup, guitar and percussion support. It was AWESOME. We were seated in the front row of the Wellmont Theater 10 feet away from Shawn Colvin. For the first (Emmylou) song, Shawn never opened her eyes. To me she seemed a little sedate. But when it was her turn to sing and the first note of "You and the Mona Lisa" came out of her mouth, it was like hearing the voice of an angel. Truth be told, all those years at Sony Music, Shawn Colvin has not been known to say many angelic things but man, she is so talented. I thought about writing a note and sailing it across the stage to her. Patty Griffin was sensational. She performed one of my favorite songs, Making Pies which is about working the assembly line at the Tabletalk Pie Company in Worcester, Massachussetts. My friend Gail (who designed the awesome Strides For Sylvie logo) played it for me in her office at Sony and we commiserated that some days, our jobs really were like working the line and making pies. Life imitating art imitating life.

We spent all of today waiting for Sylvie to be discharged from the hospital. Jessica ordered up Sylvie's chemo first thing this morning but Sylvie also needed Zofran (anti-nausea drug) and Pentamidine (an antimicrobial medication primarily given for prevention and treatment of Pneumocystis pneumonia) so our morning departure turned into a 5:30 departure. Jessica was Sylvie's nurse for the past three days and Sylvie LOVES her. When we left, I said "see you in 3 weeks!" but we all know we'll be back sooner. We don't have to be in clinic until Wednesday next week. Yippee!!!

I dropped off checks to Kathy at Tomorrows Children's Fund and she was so incredibly gracious and appreciative for alll of our efforts and the fantastic media coverage for the race. So a big thanks to everyone involved and all who continue to support TCF. The economy is really crushing not-for-profit organizations so every nickel counts. It will take us the rest of the year to write thank you notes!

On the way home from the hospital, we stopped off at the "Hello Kitty Store" as a consolation prize. Michael and I then had our consolation prize and snuck off to yoga while Sibel and Sylvie played princess games.

Finally the Hughes family is at home. Double Yippee!!! Catching up on Tivo. OMG first the Real Housewives of New Jersey dine at Varka; then they go to Fratelli! Varka is a favorite of ours and Michael and I had dinner at Fratelli before the Ridgewood Race! I hope the show is good for business. Sorry. I am obsessed and Michael is a very good sport.

Tomorrow night we are going to see my friend's band The Slewfoot Project play at Cool Beans in Oradell. It's a homecoming show and record release party. In addition, they are generously dedicating a portion of the profits of CD sales to TCF for which we are incredibly appreciative.

OK more Housewives to watch as we drink tea on the couch with OJ sitting between on us. My parents are bringing Lucky back tomorrow. She goes from being aggro retriever with us to cuddly docile dog with them. I bet they had a going away party for her tonight and spoon fed her filet mignon, chicken livers and matzoh ball soup. But as Michael and I say, with Lucky, the proof is in the poop so we shall see.

So Far So Good

Wow! A good night! Despite being up at least twice hourly due to *beeps*, wet toxic diapers, new IV bags and labs at 5 am, Sylvie remained in a great mood. And no vomiting! Sylvie was very chatty with Lisa who was her nurse last night. She was in a super mood this morning and when Michael came to visit us before work, Sylvie was sitting on the couch playing with her beaded bracelets and making art projects. It's hard coming up with activities and things to do from 6 am through 10 pm! I kept trying to sneak out and get rice milk for my cereal and Sylvie kept saying "later Mom" again and again. Jessica is Sylvie's nurse today and Sylvie is convinced that she has access to lots of presents. Sylvie constantly begs to everyone in sight, "No nose tube!" which really makes me sad. She's a little tired so we're going to read "The Nutcracker" while simultaneously watching Barbie Nutcracker on DVD. She has to be wiped out. I'm sure she'll crash just in time for Dr. Flug to make rounds and comment that Sylvie is nuts. Happens every time.

If I Ever Get Back To Hackensack

The song is kind of a bummer but "If you ever get back to Hackensack, I'll be here for you" because in actuality we do spend more than 50% of our time at the Hospital so chances are, if you are in Hackensack, well then so is the Hughes family.

Sylvie was NUTS last night demanding one food item or another all night long that of course we didn't have. MOMMY DRINK (Bolthouse Chai Latte protein drink), STRAWBERRIES (she hadn't eaten them in weeks), CHEESE (we ran out of American cheese and considered calling Andy & Catherine for some). Finally we reached the mutual conclusion that Sylvie is healthy enough for us to ignore her and since she won't walk, there is no chance that she'd climb out of bed and come into our room. I sleep like the dead and can easily sleep through it but Michael doesn't which meant that he spent the entire night running into Sylvie's room.

This morning, it was kind of a bummer applying the Emla "no ouchie" cream to Sylvie's port-o-catheter site. She was very upset, absolutely ravenous, and not allowed to eat before the 8:30 ultrasound. We stopped off en route to pick up Mommy Drink, Strawberries and Fage cherry yogurt and then headed to HUMC. Sylvie was going silly-crazy in the car watching the Ting Tings “That’s Not My Name” video on YouTube. After parking the car at the outpatient clinic, I headed up to Ultrasound and let's just say that you could hear Sylvie's screams from down the hall. She was inconsolable. I stationed myself outside the ultrasound suite so that no one could say anthing about Sylvie. Later Michael told me they didn't believe that he was Sylvie's father and asked where I was. My mom and I have alternated taking Sylvie to Ultrasound in the past and I guess they don't get many dads in there, too. It was a little annoying that the technician was not aware of Sylvie’s recent surgery so imagine their shock when they couldn’t find Sylvie’s gall bladder (“but it was there last time!”). From there, Sylvie's consolation prize was a trip to the cafe where she ogled the fish and got to order a 3-egg cheesy wrap. We went to clinic where Sylvie proceeded to stuff her face with 1/2 an egg wrap, half a pint of strawberries and the yogurt. Michael and I looked on in amazement. Jette and Paul cruised by to say hello, too. Good old times although you could tell on our shell-shocked faces that us parents are a little tired of this.

Carmen took Sylvie’s vitals and Michael and I were thrilled to see Sylvie weighed 10kg or 22 pounds—Half a pound in recent egg wrap and berries. Michael brought in Sylvie’s stuff from the car and headed into work while Suzanne accessed Sylvie’s port.

As if we weren’t busy enough, we had to go to audiology to have Sylvie’s hearing tested again because the chemo can destroy the higher range frequencies and we already know Sylvie has lost a little bit. With a full belly, Sylvie was in an AWESOME mood that carried through the rest of the day. It was hard testing her hearing in the sound booth because she was so chatty. But I can’t deny that there was an entire sequence of sounds that Sylvie did not recognize whatsoever (and I did) which bummed me out. Conversely, whose to say that maybe Sylvie just doesn’t give a hoot about those sounds and just chose to ignore them. That being said, the audiologist said that Sylvie’s “S” and “TH’s” may be affected a little but since she’s so verbal it might not be detectable in her speech. Cancer-free is obviously more important than Sally Sells Seashells Down By the Seashore.
OK so back down to the Reuten clinic where Sylvie polished off 6 wafer cookies, Munchkins and began begging for Mozza sticks and French Fries with ketchup. At this point, I am imagining tonight’s chemo and a full belly. I am not looking forward to what could be a vomit-fest.

We had a little issue with one of the ports leaking into Sylvie’s chest which Suzanne fixed. Suzanne's teenage daughter reads Princess Sylvie and said that we have the same music on our iPods. I like having the same musical tastes as someone too young to drive! Jette's mom and dad both worked in record stores when they were younger so they too have very cool taste in music. Jette's even been to a Satellite Party concert. No offense to Laurie Berkner and my friend Suzi Shelton, but Perry Farrell is a little cooler :-). I think Sylvie would like "Jane Says" so I have to add it to her playlist. Then again, I don't know if I want my 3-year-old singing "Jane says, I'm done with Sergio... Treats me like a ragdoll..."

Jette made Sylvie a dream catcher that Sylvie LOVES. Sylvie was amazed that Jette a). made it and b). made it for her.

Annette dropped by to say that Sylvie’s counts are all GREAT including Magnesium. Fantastic. We won’t know the Alpha Feta Protein count until tomorrow. I asked Annette if Sylvie will respond better to the chemo because she no longer has a malignant tumor inside her. Unfortunately that has nothing to do with it and in fact, the may do WORSE this time because her body (i.e. bone marrow) is getting pretty worn down by all the chemo. That sucks. If we stay on course, Sylvie’s last outpatient chemo will commence on July 8. Cross your fingers.

While retrieving Sylvie’s things from the clinic, I ran into my new friend Randy Jo and her daughter Chloe. Randy Jo teaches yoga and pilates and we were introduced by Chaya from Shree Yoga about 2 months ago. Chloe has PT at the hospital so we often run into each other and the girls have had hospital play dates both in the Reuten clinic and in Sylvie’s hospital room. I cannot wait until they can have a playdate not here. Chloe was sticking her feet in the rainbow waterfall in the lobby until one of the volunteers had a kniption. The volunteer said she was getting the floor all wet and Chloe told her mom that she was making an ice skating rink. She’s insanely adorable.

Sylvie keeps saying “no tube in my nose, Mom” which bums me out, too. I asked Siobhan to help us with Sylvie’s post-traumatic stress regarding tubes, etc. That being said for the first time, Sylvie is getting remotely interested in the syringes, etc. I think that’s because today the kids in clinic were making spatter paint art projects by projectile-throwing paint in syringes. It actually looked like fun and I think we’ll try it in the backyard next week.

When Sylvie was wheeled on my lap up to Room 16 in pediatric Oncology, she was ecstatic! I could say that ‘all her favorite nurses’ were waiting but really, she loves them all. Jessica was Sylvie’s nurse today but really, they all kept coming in because they love hearing Sylvie talk about princesses, Barbie, Hello Kitty and stuff in her tiny voice. I think that’s why we’re literally next to the nurses station—so they can hear Sylvie’s gift of gab. Katie and Jessica did drop by at the end of their shifts to watch Sylvie dance in bed to the Ting Tings.

For the first time in a while, I cruised into the Family Locker Room to practice yoga. Sylvie proceeded to eat some French toast, chicken noodle soup and potato chips even after Jessica started the chemo drip. Sylvie hasn’t pooped in 24 hours either so really, I think tonight is going to be a disaster. The consolation prize for my enduring this evening curled up on the bench is that tomorrow night, Michael’s mom is sleeping over at the hospital while we go to the Patty Griffin, Emmylou Harris, Shawn Colvin and Buddy Miller concert at the Wellmont Theater in Montclair. I’m ecstatic. Michael scored front row seats which is quite an improvement from the last time I saw Patty Griffin at The Bowery where I was standing behind a zillion people taller than me getting jostled right and left. Then we can go home and watch The Real Housewives of New Jersey on TiVo! A perfect night except for the fact that our daughter will be sleeping in the hospital nursing a Red Devil hangover.

Michael is watching the Yankees game while Sylvie sleeps. I need to see when the Reuten garage closes or Michael and I will be fighting for the couch bench tonight!

P.S. New Moon trailer!!!!!!!!! (http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=58185785)