Long Day in the Universe

Good think my mom and I took separate cars today because what I thought would be a 2 hour appointment at the Reuten outpatient clinic turned into 5.  Sylvie was in a pretty good mood and was even nice to Carmen until it was time to get on the scale.  Because Sylvie has not walked or stood up in weeks, she's mortified of the scale.  So we let her sit on it with her legs crossed.  21.2 pounds.  Down over a pound since her last weigh on on Carmen's scale nine days ago.  OJ the cat weighs nearly as much.  I'm hoping the steady diet of ice cream sandwiches and turkey packs the pounds back on.  Sylvie's ANC is 350 which is low so we will have to be a little more cautious about going places with her over the next week.  

Sylvie's chart had two green tabs on it which meant "pronto" so she was immediately brought into an exam room where Terri accessed her port.  It was my mom's first time watching the needle puncture flailing Sylvie's chest and she looked rather upset.  I tried to assure her that since we put the Emla cream and Glad Press and Seal wrap on the site an hour earlier that it really did not hurt.  Siobhan came in with Barbie DVDs and Sylvie was pretty content hanging out.  For the first time she was so nice to Dr. Steele that Annette even commented to her, "See, I told you so!"  I felt redeemed.  Then Sylvie's labs came back.  Sylvie's hemoglobin was 7.6 (normal = 11-14) and platelets were 36 (labeled "critical" because normal is 135-430).  Apparently, these low numbers are 'normal' in cancer patients but need to be addressed.  I had two choices: entertain Sylvie for 2 hours while we wait for Sylvie's directed donor blood to be delivered to the clinic and then another 2 hours while they do the transfusion OR come back tomorrow.  I opted for early tomorrow and am planning on being there before 9 am.  Terri administerd Sylvie's chemo, Vincristine, and we were about to leave when Annette came running back in because Sylvie's magnesium level is critically low at 0.2.  Normal is 2.0.  Last week's chemo, specifically Cisplatin, really did a number on her.  It delayed our departure by about an hour because they had to give Sylvie an IV drip of magnesium.  Sylvie was a little upset so Annette went out and bought her an ice cream sandwich.  Sylvie had no idea that how much we all loved seeing her devour half of it (125 calories) and I was so appreciative of Annette's kind gesture.

I asked Dr. Steele about post-surgery chemo and she said it depends on the state of the tumor tissue when they operate.  Let's say the tumor is smaller, but still living breathing cancer cells.  That means more rounds of chemo.  Let's say the tumor has a lot of dead tissue. That means fewer rounds. 

I asked Annette if they could schedule Sylvie's pre-op blood work at the Reuten clinic instead of the main hospital since they will be less sympathetic to a toddler and not have a clue what to do about with the Port.  Not to mention, it's scheduled on Sylvie's birthday.  She's fixing it.

Margaret O'Neill, who is our assigned social worker dropped, by to say hi.  I asked her if Sylvie has the surgery at HUMC and we are in the Pediatric Intensive Care Unit instead of Pediatric Oncology, can we request our regular team of social workers and child life workers?  It would really bum out the whole Hughes family if we had a new set of folks to 'get used to.'  Margaret said they would definitely be there for us and Sylvie which made us feel better.

This is the schedule for the next week or so:

Today- Outpatient Chemo at Reuten Outpatient Clinic

Friday- Blood transfusion, platelet transfusion, magnesium drip

Monday- Labwork at Reuten Outpatient Clinic

Tuesday- 2:30 appointment with Dr. Steven Dunn in Wilmington, Delaware

Thursday- Outpatient Chemo at Reuten Outpatient Clinic. END OF ROUND 4!!!!

Friday- CT scans of Pelvis, Chest and Abdomen

I am not a betting woman however I would say that I think it's highly likely Sylvie will run a fever between now and next Friday and be admitted to the hospital.  I am concentrating VERY hard on thinking positive and the word BELIEVE but based on past performance, we'll be sleeping on the bench at some point next week.

When Michael got home we pinned Sylvie down and made her take Colace.  She keeps crying that her stomach hurts and it's hard to tell if it's the tumor, constipation or hunger.  That being said, once the Colace took action, Sylvie said she felt much better.  She went to bed early only to rise up half an hour later and say, "Hey Dad, I'm not tired.  Take me downstairs, I'm ready for fun."  I have to admit, I was ready for Sylvie to go to sleep!  I made Michael soft shell crabs for dinner (no exoskeletons for me!) and had hoped to grill some salmon for Sylvie but the chemo really killed her appetite.  

Watching Drugstore Cowboy for the first time.  They conjure up insane schemes in order to steal drugs.  Heather Graham is 18 in it.  Matt Dillon looks a little like a skinny John Mayer.  Kelly Lynch looks like Juliette Lewis.

Strides For Sylvie

For information on running (10K, 5K) or walking (1 mile) check out the great website that Catherine designed, www.stridesforsylvie.com. Anyone who needs to hang out at our house before or after is more than welcome to do so.  We'll figure out the car shuttling down the hill to the race start.

Thanks for the Karas and Chase families who have been working with the village of Ridgewood, the running organization producing the race, local media and the Tomorrows Children's Fund.  Catherine has also been organizing training runs at the Duck Pond.

My friend Gail who is also the most gifted art director I know, designed the badass logo. T-Shirts are in production and thanks to my friend Lee's recommendation of Dan at iPromoWorx who made it happen in a timely and very affordable way.  Andy made Strides For Sylvie bracelets, too.  

Anatomy 101

And now for your biology & anatomy lesson!

Sylvie, Michael and I met with Dr. Valda yesterday in his office which was a treat since we'd only seen him before in the hospital.  He's a VERY nice guy.  Sylvie was her usual beserk self and after a 10 second physical exam, Dr. Valda's amazingly kind receptionist offered to play with Sylvie at her desk while we talked in depth about the procedure.  We didn't hear even 1 millisecond of screaming so we knew Sylvie was having fun outside.

So here it is.  Sylvie thank goodness does not need a liver transplant but there is no such thing as "simple liver resection."  Dr. Valda said they will perform one of two different procedures depending on what Sylvie's liver looks like after they open her up (*you will read later about the incision).  The first is an Extended Right Hepatectomy also called a Right Hepatic Trisectionectomy, which involves the resection of segments IV to VIII and often includes resection of the caudate lobe (segment I). This resection is necessary to treat right-sided tumours that extend into segment IV. Basically, this is removing the right lobe and some other parts of the liver leaving just the left lobe.  The other procedure is would just remove the right lobe.

The procedure itself will take roughly 4 hours with two surgeons working simultaneously, Dr. Victor Valda and Dr. Frederick Alexander, M.D.  Dr. Valda, as you have read already, is the chief of pediatric and adolescent surgery.  Dr. Alexander actually designed the surgical facility at HUMC and is the chief of general and thoracic pediatric surgery at HUMC and is also a clinical professor of surgery.  When I hear "professor" it also reminds me that HUMC is a teaching hospital however with this type of procedure, there might be an attending surgeon in the OR but no residents. 100% of the procedure is performed by Drs Valda and Alexander.  Dr. Valda said that with the exception of a transplant facility (like Pittsburgh or Nemours/DuPont), most surgeons would only perform one or two of these procedures annually.  Dr. Valda did it recently on a newborn baby who had a full recovery.

Onto biology, once you remove the diseased or necrotic (dead) tissue, the liver has several arteries that all go to the vena cava which drains right into the heart.  Yikes.  So they have to very carefully close them off.  In addition, the liver is essentially a bloody sponge so they have to carefully monitor for excessive bleeding.  Sylvie's gall bladder would also be removed.  She would have a drainage tube in her abdomen for 4 days post-surgery.  And an NG tube until they confirm her intestines were not disrupted during surgery and she can eat again.  Sylvie will need blood, at least a pint, during the procedure.  He uses some sort of spray sealant protein to seal up the bloody tissue which gets reabsorbed by the body.  Stitches will be dissolvable. 

I asked Dr. Valda if the incision would be small like my c-section scar and he said, "Oh no, it will be across her whole belly."  YIKES.  No bikini's for Sylvie this summer.  At least.  If they need to go higher in her abdomen, they may make a perpendicular scar which he compared to a Mercedes symbol.  I am REALLY hoping this is not the case.  I have a scar from my neck down to my butt with a zig zag one on my hip (just like my friend Tina!) and have never been self-conscious about it however it's not the most-visible either.  "Oh Lord, won't you buy me a Mercedes Benz, my friends all drive Porshes, I must make amends!"   Always a song going through my head.

Sylvie would be in pediatric ICU ("PICU") for 5 to 7 days and then home.   As soon as her blood levels are good and the liver begins to regenerate a little, Dr. Harris would begin more chemo.  No more than 3 weeks after surgery.  We don't have the post-surgical chemo plan yet but that's when/how it will start.

Since the liver controls glucose absorption (the reason for my psychotic aversion to high fructose corn syrup!) they need to monitor this closely following surgery.

Knowing that the two most experienced and regarded surgeons at HUMC would be performing the procedure is reassuring.  That being said, we are still doing due diligence and meeting with Dr. Steven Dunn at Nemours/ Alfred DuPont Children's Hospital in Wilmington, Delaware next Tuesday.  

All of the aforementioned doctors are out-of-network, too.

When we exited Dr. Valda's office, Sylvie was literally being cradled in the arms of his receptionist.  They had become fast friends and Sylvie even hugged her goodbye.  We stopped to pick up Sylvie's pizza, had gelato ("Sylvie, Gelato is a fancy word for ice cream") and headed home.  My parents came over to babysit and we ran into the city to see Into the Presence play their last night at Piano's.  We met Tim at Spitzer's Corner on Rivington Street.  We skipped the pork fat popcorn but otherwise the food was surprisingly great.  For being one of the best and most celebrated drummers in rock music, Tim is incredibly cool.  We talked about their record being available on iTunes and that Maynard was going to Twitter about it.  Then we went over to Pianos where we found Luis and Ana. It was like a little family reunion.  The show was pretty spectacular.  I hope to see them all in a week or so again since their tour dates continue along the east coast beginning with Atlanta. I offered some sight seeing suggestions based on my crazy business trip with my friend  co-worker Tim there last year and we all agreed the south is very different from anyplace else.  Luis offered to babysit Sylvie and I said to my young friend, be careful what you wish for although she'd like his long hair, eyeliner and that he can DEFINITELY sing and play guitar better than mommy & daddy.

OK need to apply Emla cream to Sylvie's chest (*note to self, pick up more cream at pharmacy this afternoon!) and get ready for outpatient chemo.  My mom is going to come today so that I can show her the whole procedure in case she needs to do this when Michael and I are back at work.  Once you get the hang of the different parking garage, elevators (or "alligators" if you're Sylvie), check in, vitals, blood/lab room, Siobhan, Yoomi, movies, art, music, doctors, nurses and food, well then it's easy.  Otherwise, I prefer to not have 'guests' on outpatient day because it prevents Sylvie from bonding with the nurses and doctors.  Today Sylvie is seeing Dr. Steele and I am hoping that Sylvie will be nice to her.  She's the one doctor who she has not warmed up to which doesn't surprise me because of our earlier trials with her however Dr. Steele has made a greater effort than most to be warm and fuzzy towards Sylvie.  I might put some Princess stickers in my purse and give them to Dr. Steele before entering the exam room.

Believe.

It's Thursday and my friend pointed out to me last night that I had not posted since Saturday.  A lot has happened since then!

First of all, little Pablo is out of the hospital and recovering at home.  One word:  BELIEVE.  They don't have the pathology report back but as everyone touched by cancer will tell you, having an extremely positive attitude, strong conviction and beliefs is better than any medicine, radiation or surgery.  www.getwellpablo.blogspot.com

Second, for the first time in 11 weeks, I went to the office Tuesday morning!  First I had breakfast with Vic from Razor & Tie at my favorite place, Grey Dog, on Carmine Street.  Having suffered working in midtown for 13 years, it's a treat having an office in the center of Greenwich Village with pretty fantabulous dining options including at least 3 vegetarian restaurants!   Anyway, Vic asked me if I thought coming back to work mid-June seemed likely and I surprised him by saying my goal is June 8, depending on Sylvie's post-surgery recovery and beginning of round 5 of chemotherapy.  That being said, at this time there's no way I can return to work full time based on Sylvie's doctor visits, in-patient & out-patient treatments, at home medical regimen and surprise visits to the Emergency Room, so we're assessing the work load and I am hoping that hopefully this will work out.  I am eager to get back to work and be part of the team but I also don't want to be a burden on anyone either.  

Third, let's talk food.  If you told me three years ago that my kid would be eating Baskin Robbins rainbow sherbert ("it tastes like rainbow!"), Lollipops, Pizza and ice cream sandwiches FOR BREAKFAST and penne alfredo IN BED at THREE O'CLOCK IN THE MORNING, I would definitely say something on the order of "No F$&%&% way!" or "You're on drugs."  Alas, this is our life.  Sylvie was so used to getting 500 calories at night via the NG tube that she's a starving lunatic in the middle of the night.  I really hope this balances out sometime soon. It's like having a newborn baby that talks back to you.  I looked at Michael the other night and said, "I just can't do it!" so he and Lucky went to sleep in Sylvie's room, bowl of pasta in hand.  I love it, not, when Sylvie says, "it's too hot...it's too cold... the pieces are too big... too small" and my favorite, "it's too crunchy" regarding a fish stick (organic of course!) when she had just eaten 4 pieces of pop corn.  Sylvie's new favorite is pizza to go from Ridgewood Pizza and then eating vanilla gelato in the Whole Foods cafe as an appetizer.  Last night, Sylvie rediscovered Applegate turkey breast and is currently eating it for breakfast, too (along with Greek Gods honey yogurt, a piece of Amy's Pizza and the prerequisite lollipop).    

Since I'm home, I have the liberty of doing gardening work at 'normal hours.'  Before, I used to have to do it at 5 am which pretty much sucked.  Anyway, the hard work of planting spring bulbs has paid off however as I stare at the tulips and daffodils, I've come to the conclusion that the Dutch Gardens in Vermont packed some of the wrong ones in the individual bulb bags!  They look very colorful but I can assure you that I would not have planted elegant Black Jewel tulips (the color of Essie "Wicked" nail polish!) alongside the more pedestrian daffodils!  We shall see!  I spent hours picking, plotting and planting them...

 I'll write a separate posting on our meeting with Dr. Victor Valda yesterday.

Prayer for a Friend

Sylvie was pretty insane today.  We reflected that at this point during each round of Sylvie's chemo, she was about 24 hours shy of being back in the hospital.  I think todays nuttiness was brought on constipation caused by Vincristine however we dutifully prepared meals, bought ice cream, bagels and donuts only to be thwarted by Sylvie time and time again.  Michael mixed Senna with caramel ice cream syrup and after a massive struggle and mess, got Sylvie to swallow about half of it.  Not to be graphic but after it worked it's magic, Sylvie thanked both Michael and me for giving her medicine that made her feel better.  It's the first time that she's made a connection between medicine and feeling better.  

By now Michael and I have met lots of families going through the ebbs and flows of caring for a child with cancer and everything else associated with it.  We don't know any whose children have hepatoblastoma liver cancer since it's so rare; mostly leukemia.  Some rare and some common.  Ages 2 through 10.  Some are single parents, some live very far away from the hospital, some are a little freaky deaky and others just like us.  There are those of us whose children are being treated for the first time and others whose children's cancer has returned.  The bone marrow transplant kids are pretty much restricted and not allowed out of their hospital rooms so you rarely see them.  Except for little James who we've known for a while and is constantly being wheeled around the floor by his mom in a Little Tykes wagon.  His mom, Shannon, complimented me the other day for looking nice and I said that when she saw me wearing the same clothes three days later, I'd understand if she didn't feel the same way.  All of our children have different prognoses some better than others as you might expect.  

We can obviously relate to one another as only the parents of sick children can do but it's still extremely difficult to come up with the right words.  Cancer sucks period.  

When Sylvie was first diagnosed, my friend Jim asked me if I knew a fellow music industry executive living in Los Angeles whose son, Pablo, has cancer (Wilm's).  He forwarded me the blog written by Pablo's parents which was the inspiration for PrincessSylvie.  Pablo was nearing the end of his chemo (after 11 months) and  his mom, who I don't even know, has been my unofficial tutor in explaining blood counts, coining the phrase "Red Devil" for Doxorubicin and more.  I found a kindred spirit in Pablo's parents.  Until yesterday, I hadn't checked their blog in two weeks.  Upon reading that Pablo's final CT-scans, after 11 months of chemotherapy and radiation, showed new tumors in his lungs, we cried.  We went to bed.  We got up and read it again.  And cried again.

So ask me if I know what to say to his parents, fellow cancer parents, who despite working in the same ever-shrinking business, I don't even know, and the answer is no.  But I will figure it out because I think it's better to say something than nothing.  

Thank you for the kind words, thoughts and prayers which you have bestowed upon our family because without them, I might not know what to say.  Tonight I also ask our friends and family to say a prayer for Pablo and his family.

May 14

Dr. Valda and Dr. Harris officially scheduled Sylvie's surgery for May 14th, two days after Sylvie's third birthday and ironically my original due date. I've never been a fan of Mother's Day so I was pretty nonplussed having spent my first Mother's Day in NYU Medical Center as a new mom and my third Mother's Day preparing for my daughter's liver resection. Michael and I plan to sit down with Drs Harris and Valda to review the procedure, the hospitalization, the recovery, the post-op chemo regimen and a host of other things.

Yesterday was Earth Day and I resisted prosthelytizing which I fully admit to doing a lot of, sometimes inappropriately & with reckless disregard (sorry!). Every day is Earth Day but if it isn't for our friends, family & coworkers, well I hope that yesteday everyone made a conscious effort to reduce, reuse and recycle. I had given Michael my Court-TV (thanks Kitzy!) travel cup to Michael in the morning. He had slept over at the hospital and would be walking to the train and thus two coffee options. Option #1 is the Starbucks in the Children's Hospital, 7-deep with sleeply doctors and nurses waiting in line. The second and very unsexy option if you ask me, is the McDonalds next to the train station however it does serve Newman's Own/Green Mountain Coffee Roasters organic coffee. (I would have option #3 which is no coffee at all). Anyway, the last time Michael went to the McDonalds and presented his aluminum coffee travel mug, the kid behind the counter looked shocked and literally did not know what to do with the cup. Michael had to talk him through the process of filling the coffee, however many ounces, into the travel mug. Since Michael deemed it impossible to explain why he didn't want to waste a paper cup and preferred his travel mug, he just said to the cashier, "I don't want anyone on the train to see me drinking your crappy coffee." Or something like that. So yesterday, in honor of Earth Day and my pushing upon him the travel mug, he returned to McDonalds and had an easier go of it. Which left me drinking all hot and cold beverages out of my Eyes of the World Yoga Center oversized ceramic mug. No worries! Fast forward 12 hours when Michael was carrying my mug in Sylvie's hospital room, he tripped on the desk/cart smashed the mug into a million pieces and got a massive bloody nose in the process. I drank water out of Sylvie's Little Mermaid sippy cup minus the top last night.

I just started reading "Animal, Vegetable, Miracle" by Barbara Kingsolver who wrote one of my favorite books of all time, "The Poisonwood Bible." For the second year, we have a community garden plot and Michael has agreed to do everything I say this year to avoid the great tomato jungle that ensued and disrupted the garden last year. Originally he made fun of my stakes, string and tape measure! It resulted in a very expensive organic garden as it relates to total vegetable yield and let's just say that if the Hughes family was expected to live off our garden last summer, we surely would have had to resort to eating the shingles off our house.

While Michael was nursing his wounds last night and putting on a game face for Sylvie, I went to the city to see one of the bands I'm working with play a packed show at Pianos. I've known Luis from Into the Presence for over 8 years and I feel like I've known Tim that long. I was pleasantly surprised to see over half my company at the show, too, as well as lots of fellow music biz friends. I felt good to be part of something other than Sylvie's cancer and hospital family. It was also a subtle reminder that at some point in the immediate future, I need to figure out returning to work in some capacity. I got a great parking space in front of Max's Fish which I am happy to say that I haven't imbibed in since around 1993 at the latest. I got back to the hospital around 11 pm and settled into a freezing night hoping that Sylvie would not react from either the Doxo or Cisplatin.

I donated blood today for Sylvie and it was the first time that I read the messages written by our friends and family in the little blue book with Sylvie's school photo that Nadia keeps beside her desk. Thank you everyone infinitely!!! It's one thing to feel part of a greater community and another thing for Sylvie's to be physically connected to so many wonderful people. My dad is a local celebrity in the blood bank. Everyone there knows him and speaks very affectionately about him. His notes to Sylvie in the blue book are very heartfelt, too.

Sylvie is being discharged after chemo today (Vincristine). They're holding off all morphine to see if Sylvie is masking any nausea. We're also going to try and get her to stand up or walk today. We're all eager to go home, hopefully without any tubes or intravenous medication which is likely.

Song for Sylvie

It's taken me 10 weeks to realize it's easy to post a video.  I wanted to share one that my friend Michael Grant made for Sylvie.  When he isn't posed in front of a swimming pool in either Hollywood or Las Vegas, he's the singer of a band I work with and adore, Endeverafter.  Let's just say that there are many Endeverafter videos on Youtube that I would never let Sylvie watch although almost 40 million people around the world have :-).

Enjoy.

I don't want to eat pancakes, I just want to smell them

Sylvie was DY-NO-MITE all day long!  She was nice to Carmen who took her vitals in the Reuten outpatient clinic.  She hugged Suzanne the nurse who always takes care of her in clinic.  And she made pictures for Siobhan who is the Child Life worker who is Sylvie's adult BFF.  To anyone who asked, Sylvie proudly declared, "NO TUBEEE BECAUSE I AM EATING."  Hallelujah and not like Jeff Buckley but more like a Pentacostal minister screaming HAL-LE-LU-JAH!

Sylvie spent the past 3 days free of medicine so Sylvie's lab work would determine if that was bad idea.  Her hemoglobin was 10.1 which is low but considering last Monday it was lower than 6, it could be much worse.  Her ANC (absolute neutrophil count) was 1850 which is decent and plenty high enough to begin chemo this afternoon.  After 2 hours, Annette came in to tell us that on Friday, Sylvie's magnesium level was 1.4 (low).  3 days later and with no supplemental magnesium, Sylvie's level is 1.5 (NORMAL).  Yeay!  There is no explanation for it and none needed!  She was previously taking around 1600 mg of Magnesium daily which is enough for a small horse.  If she continues eating, I may just crush magnesium tablets into her smoothies.

Once again, Sylvie is back in Room 4.  I did tell the nurses that although we may wax nostalgic about our little slice of paradise on 5East however it's also like Antarctica in there.  I have to put princess decals on the door because we've been in so many rooms that we'd forget which one otherwise.  Her new friend Jett is down the hall.  Jett's a little older than her and has taken Sylvie under her wing after only 1 brief encounter in the art room.  She's made Sylvie pictures and even got her a My Little Pony puzzle.  Oddly enough, we have a playdate tomorrow in the hospital so long as both girls are feeling up to it.

Kristen was Sylvie's nurse during the afternoon and started Sylvie's Doxo ("Red Devil") and then Cisplatin.  Sylvie wasn't even scared by the hazmat suit and mask this time.  Sylvie also sang a mean rendition of Amy Adams "That's How You'll Know" from the movie Enchanted for her.  At 8 pm, Pinky came by to say that she'd be Sylvie's nurse for the night.  Just to refresh your memory, the last time Pinky was Sylvie's nurse, Sylvie pretended to sleep and smashed Pinky on the head with her Disney princess camera.  Tonight however, Sylvie was chatting up a storm with her.  Let bygones be bygones!  

Michael is sleeping there tonight.  Needless to say I am praying that Sylvie does not get stomach sick for both of their sakes.  She asked for pancakes for dinner tonight and when they arrived she eagerly waited while I slathered them with butter and maple syrup (remember-- I'm looking to add calories!).  I proceeded to cut them into precise little pieces only to have Sylvie say, "Mom, I don't want to eat pancakes, I just want to smell them."  

Day of Rest!

You have no idea what it's been like having a weekend free of most of the physical reminders of Sylvie's cancer.  And getting to sleep in the same bed as Michael.  And seeing Sylvie eat most of an omelette. 

Fortunately the weather was on our side.  We were determined to have a little normalcy with the exception of counting protein grams + calories, wearing purple chemo gloves when changing Sylvie's diapers and continuing to pry open Sylvie's mouth to brush her teeth.

Saturday morning was baby Bella's baptism (Michael's her godfather) so Grannie Annie babysat so we could attend our first baptism ceremony with the Karas family.  I was excited to see that little Ellie was also being baptized!  I felt like the staff photographer! Afterwards, we had to run to Town & Country compounding pharmacy, for a change, and get Sylvie's $50.00 'medical grade' Metagenics Ultrameal protein powder.

Meanwhile at home, Sylvie was draining chocolate peanut butter shakes so we had to cut the festivities short in order to whip up another batch.  

We took Sylvie to the Duck Pond for the first time since last fall.  I was hoping Sylvie might be inspired to walk after seeing the other kids running around.  She was more into the ice cream truck.  Just like old times, we got a Dora pop and sat on a picnic table.  Shortly thereafter, we moved over to the purple swings that resemble car seats.  I strapped Sylvie in securely and she was seriously ecstatic.  

Sylvie yelled at the top of her lungs, "I'LL BE THREE!"  "ON MAY 12!"  "NO MEDICINE!"  "NO TUBEEES!"  It was at that point which I looked at Sylvie and asked myself, "Self, if this was not your child, would you think that she was sick?"  The answer being yes, of course.  The mom next to me laughed probably because I was just so overjoyed by Sylvie's enthusiasm.  I needed Sylvie's exuberance on the swings just as much as Sylvie did.  From there, we attempted an ice cream sandwich but I drew the line and refused to buy a Tweety ice pop claiming to have no money.  We ran into Sylvie's classmate Viraj and his family, too.  I ran home in time to pop over to our friends who just had a baby on Thursday.

Prior to Sylvie's getting sick, I have to admit that I made a laborious effort to prepare a variety of foods for her only to be thwarted 75% of the time.  So it was no great surprise that this morning, I made Sylvie a waffle, an omelette, more lentil soup and a chocolate peanut butter shake (note:  do not use coconut oil as a calorie additive-- it's solid at room temperature!).  Sylvie wouldn't eat the waffle but was pretty pleased with herself while eating little pieces of the eggs.  And the soup ("soup makes my mouth feel better!").  Whenever Sylvie said, "No Tubeee!" Michael explained to her that as long as she eats, there will be no tube.  

Sylvie spent the better part of the morning asking to go to a Laurie Berkner or Audra Rox concert.  I love it when we try to sneak Ryan Adams on the car stereo and Sylvie says, "That's not my music!" and forces us to put on Laurie Berkner, Audra Rox and Suzi Shelton.  No disrespect to any of them but sometimes, I just wanna hear adult music too!

Late this afternoon, we took a chance and went to Ramapo Reservation.  I told Sylvie we'd go looking for 'things' on our hike and proceeded to stuff leftover plastic eggs with stickers.  Sylvie was psyched to be the toddler backpack strapped to Michael's torso and we went out for an hour and a half.  Once again, she yelled, "NO MEDICINE!"  "NO TUBEEES!"  And then she sang out loud The Ting Tings.  We were psyched, too and you could hear me singing "That's Not My Name" on the other side of the lake.

Today is both Sylvie's grandpa and pop-pop's birthday.  Sylvie picked out a pink birthday cake for my dad and fortunately we had enough birthday candles to light and relight them multiple times. 

Her temperature today stayed at 99 which is a little alarming since it usually only goes up from there.  

Tomorrow, we have to pack up Sylvie's stuff for our return trip to the hospital on Tuesday.  She reminded me today that I forgot her 'baby' the last time.  I won't make that mistake again!

Zzzzzz

Michael opted to check out our adventures in outpatient clinic today instead of working.  We're actually pretty exhausted since we both have to administer Sylvie's antibiotic ball from midnight to 12:30 am and don't want to screw up.

Sylvie woke up at 6 am starving and proceeded to devour some more cream cheese and then half a chocolate peanut butter shake.  I followed a recipe that Karen from The Whole Child gave me and boiled & mashed enough kale to get a few teaspoons of green stuff to add to the concoction. Plus some yogurt, vanilla ice cream and Ultimate Meal powder.  Simple math measured it to be over 700 calories.  A Big Mac of sorts.  

I gave Sylvie her Fortaz/Heparin around 8 am and finally I think she understands that it does not hurt.  That being said, there was NO WAY we could get her to orally take her Bactrim or Magnesium.

We arrived at the Reuten outpatient clinic around 11:30 and Sylvie decided to put on a show for Michael and be pretty much insane.  Yoomi played her fancy rosewood Martin guitar for Sylvie while she watched another Barbie movie.  Suzanne drew blood from Sylvie's port and for the first time, Sylvie helped flush the IV line by pushing on the end of the syringe.  I don't know if that's good or bad.  At least she wasn't crying.  

Dr. Appel, Dr. Halpern and Annette all examined Sylvie and she was pretty tolerent of them.  Dr. Steele came by to say hello which drove Sylvie bonkers.  I love that she dresses a little like Laurie Bernker-- lots of bright colors-- but I think Sylvie has hospital flashbacks.  I lied and told Dr. Steele that the only person Sylvie is nice to is Dr. Halpern.  She knew I was lying but also that I was trying to make her feel better.

Linda, the nutritionist came in and we reviewed Sylvie's food and the shakes.  Whereas as adults, we try and cram in a ton of protein and low carbs.  In Sylvie's case, a healthy 3 year old weighing 22.3 pounds would only need 11g of protein a day. They upped Sylvie's to 20g.  That being said, protein powder + milk + peanut butter + whatever equals a lot of protein.  Hence we have to use less protein additives and more carbohydrates.  Linda gave me a box of DUOCAL calorie additive that's like cholesterol in a packet (palm oil, coconut oil, etc.) to add to the shakes.  We have never ever used a whole jar of peanut butter so quickly!

We had been waiting for Sylvie's lab results and Annette and Suzanne rushed in, very excited.  Not only are we allowed to discontinue the Fortaz, but Sylvie also doesn't need Neupogen shots.  AND we don't have to come in for labs on Monday unless Sylvie is acting funky.  What this means is:

a). No torturing Sylvie

b). No extraneous visits to the hospital

c). Michael and can actually get some sleep

I joke that Sylvie's Fortaz 'balls' and all the accoutrements cost $280/day for a 10 day supply ($2800) but since we only needed it Wednesday evening through Friday morning, essentially it cost $1000/day which insurance is PAYING but they still WON'T pay the $95/week for the Complete NG tube food!

Michael got to really experience a full day of Sylvie bossing us around.  I have to admit at 6 pm we asked Sibel to watch her for an hour so we could go to the gym.  I just needed an hour of not talking to anyone or being ordered around by my toddler.  Michael was just fried!

We began utilizing the sticker chart that Siobhan made for Sylvie in the hospital as a way to encourage Sylvie to eat, walk and brush her teeth.  Brushing her teeth involves Michael prying open her mouth and trying not to get bit.  

Sylvie has gone to bed the past 3 nights at 7:30 which I guess is normal toddler time as opposed to working parents toddler bed time which is usually much later for us.  However, she wakes up constantly hungry because she's used to getting nearly 450 calories via the NG tube while she sleeps.  Under ordinary circumstances I would never condone this but for now, we keep a bowl of cottage cheese and a shake in her bedroom for her cravings.  

But these are no ordinary times in our household!

Free at Last!

I relieved Michael at the hospital at 7 am, literally, since Sylvie woke up at 4 am when the nurse came in to change her port lines and draw blood.  Sylvie sensed the nurse was a newbie and went beserk until Courtney came to help.  From that point on, Michael and Sylvie were busy making art projects, reading and playing with the new birthday cake counting game that I picked up at Lakeshore Learning the other day.  

My mothering skills in the hospital have also taught me that early mornings indicate hunger so I quickly gave Sylvie a bagel with cream cheese.  She must have licked about 1/4 cup of cream cheese off of the bagel and attempted to eat pancakes.

By 8 am Maria from the pediatric cardiology department was outside ready to set up her apparatus in advance of Dr. Dyme's arrival for Sylvie's echocardiogram.  Sylvie's immediate reaction is always thrashing insanity and the didn't let any of us down.  We were about to get started when the EKG technician stormed in and asked if she could 'go first' since it should only take about 5 minutes.  Ha.  Ha.  Ha.  Five minutes later, Amy and I were trying to hold Sylvie down while Maria sang & danced and Sylvie continually ripped off the 10 EKG stickies.  To be honest, I'm not even sure if she got a decent EKG picture.  Next up was the pediatric cardiologist, Dr. Dyme (Josh).  Michael and I absolutely adore him.  He's our age and has a little girl the same age as Sylvie.  In addition, he's made a point to tell us how much he adores Sylvie and keeps tabs on her progress.  I positioned Sylvie on my lap so that I could restrain her if necessary (ha again!) and Josh got started despite Sylvie's protests.  "DAAAADY  DAAAADY DAAAAAADY" she wailed over an over while I rolled my eyes and apologized.  Josh told me that he and his wife should meet for coffee to commiserate about our daddy's little girls.  Once Josh got his images, he departed and Maria continued the procedure.

The point of the Echocardiogram is to monitor if the chemotherapy drugs (specifically doxorubicin) stresses the heart muscle.  This was Sylvie's third or fourth one.  Josh observed that the septum between the left and right chambers of the heart was a little slower than the rest of the heart however usually he would see the entire heart affected, not just one part.  That being said, it's something we will keep an eye on in the future.

As Josh was exiting, in came Sylvie's medical team led by her unequivocable favorite Dr. Halpern.  He sneak-attack tickled her out of her funk.  It was pretty remarkable.  They laughed and high-fived.  Pretty soon I was high-fiving because he said we could go home TODAY with no NG tube however Sylvie would need to get Fortaz antiobiotic via her port at home.  We really did not expect for Sylvie to be discharged today.  Linda, the nutritionist, stopped by to say that she did not want Sylvie to get a tube until the end of next week and hopefully we can go longer.  Since Sylvie is mentally sound, there is no reason why she won't a). get VERY hungry and b). EAT.  Unless she gets mouth sores that inconveniently can return any time between now and next Tuesday.  Lovely.  Linda said to do our best with the oral medicine in the meantime and focus on eating.  Ellen set up for a Home Health nurse to come over and teach us about accessing Sylvie's port and administering medicine.

20 minutes after peace was restored in Room 4, Sara from audiology entered.  She's super sweet and over the past 2 months, she's come to visit and check on Sylvie's progress.  I was counting on Sylvie turning on her charm.   Sara performed a test that measures sound waves in Sylvie's inner ear.  The point of the repeat hearing test is to monitor if the chemotherapy drugs (specifically Cisplatin) have affected Sylvie's hearing.  The initial test done when Sylvie was first diagnosed was perfect.  Today's indicated that some of her high range hearing (i.e. dog whistles) has been affected but the 'speaking range' is perfect.  She repeated a similar but different test later in the audiology lab that yielded similar results.  There's no telling if Sylvie's hearing will continue to be affected by the Cisplatin or if it plateaus but we'll obviously keep an eye on it and hope for the best.

We returned to the room and Sylvie was back to her cream cheese diet.  Cream cheese on bagels, nachos, you name it.  I ordered up everything bland and white on the menu:  bagel w/ cream cheese, potato soup, fettucini alfredo, vanilla ice cream and a vanilla shake.   And Sylvie tried it all.  First, she would feed it to me, then she would try to eat it herself.  This would officially be Sylvie's FIRST meal in 9 weeks.

Fast forward within minutes of arriving home, the home nurse Dottie arrived and opened up the gigantic box filled with syringes, medicine bulbs and other supplies.  She spent about an hour teaching Michael and me about all about sterile environments, opening the lines, administering the Fortaz, flushing with saline and Heparin.  It was a lot to digest.  Dottie is on call all weekend fortunately.   She began administering the Fortaz and half an hour later, she watched me as I flushed the line, administered Heparing, closed the lines off, voila.  She was impressed by my single-hand ability to clean, prep syringes and hold the lines which I attribute to my volunteering with the Mobile Intensive Care Unit at Wayne General Hospital, working as a pharmacist tech and at a veteriniarian's office all during high school.  I laughed out loud when Dottie reviewed her mandatory protocol that included asking us if we had an emergency evacuation plan for tornados and hurricanes.  

We are only given what we can handle... (thanks Gail!!!).  This whole experience has made me revisit wanting to become a certified EMT in the future! 

We're all thrilled to be home despite the added challenge of dealing with the port.  Not to be selfish but Michael and I have 5 nights in which we can actually sleep in the same room!

Sylvie has outpatient chemo on Friday and will also have her port needles changed.  Round 4 of in-patient chemotherapy begins on Tuesday.

Schedule for tomorrow:

8am Fortaz through port, oral Magnesium

12 pm Magnesium, Neupogen shot

4 pm Fortaz through port, oral Magnesium

8 pm oral Magnesium

12 am Fortaz through port

Cute Pictures of Sylvie with Pop Pop, Grandpa and Silly Dog

Chopped Liver

Cute photo of Sylvie and Samantha making funny faces Monday night.

What does it mean when the nurse comes in to give Sylvie her G-CSF shot (i.e. Neupogen. Granulocyte-colony stimulating factor, a growth factor that stimulates the bone marrow to make more white blood cells) and I interject and offer to do it myself?

Sylvie was in great spirits today and I think Dr. Halpern was tickled pink when he sneak-attack tickled Sylvie and she erupted into giggles at least three times. Tickling is a great way to feel her tummy! Dr. Halpern was amazed by how Sylvie has been responding to chemo and said that if you did a physical exam of her abdomen, you would not be able to feel anything abnormal. Pretty incredible that there's still a ticking time bomb inside.

The team didn't seem to be able to tell me when Sylvie would a). have surgery or b). go home and we danced around in circles a few times.  To make a long story short, ultimately Sylvie's blood counts are too low do do anything including going home.

I talked to Dr. Harris later in the day who had spoken with Dr. Dunn who indicated that Sylvie does NOT need a liver transplant!
This is GREAT news! Dr. Harris and Dr. Valda (head of pediatric & adolescent surgery at HUMC) talked further as well. The current plan is for Sylvie to have repeat CT-scans after the 4th round of chemo and surgery 3 weeks later.

Interesting facts, Dr. Valda worked on the successful separation of siamese twins in 2000 who shared a liver! Dr. Harris himself underwent a liver transplant less than 4 years ago (and talked about it on the Today Show with Katie Couric, too).

Tomorrow, Sylvie has an action-packed day complete with an audiogram to see if the Cisplatin has affected her hearing as well as an EKG and Echocardiogram with Dr. Josh Dyme. He's pretty awesome. I ran into him once in the parking garage and he told me that he's been following up on Sylvie's prognosis which I thought was pretty cool.  

I will be bringing my yoga mat into the hosp and sneaking off to the 'family locker room' when I have a moment to myself although I might just fall asleep on it.

Looking forward to going to sleep before 9 pm.

Tubular

Michael texted me last night at 2:24 to say they just started administering platelets to Sylvie. What that meant essentially is that from 2:24 am until roughly 6:30 am, Sylvie was getting platelets, red blood cells, Fortaz antibiotics and Tylenol. That amounts to an endless amount of beeping. Courtney, the nurse, checked Sylvie's temperature every 15 minutes throughout the night, too. I got to the hospital at 7:00 am so that Michael could take a quick shower and catch the train to the city. I feel like an "imposter" driving in rush hour traffic to the hospital.

In my mind, I imagined Sylvie's fever going away like it did the last two times, heading home on Tuesday afternoon and then back for chemo on Thursday. After about the fifth person, be it doctor or nurse, mentioned to me "the week" in the hospital, it became abundantly clear that Sylvie's not going home tomorrow. I had been hoping she might actually be HUNGRY and ordered from In Room Dining cheesy eggs, porridge, a bagel (I know... it's Passover!) and a banana. It went untouched until I ate the eggs. Dr. Taira came in and we hugged like long lost friends while Sylvie asked to see the photos and videos of Disney World on her Blackberry.

Amy, who is Sylvies nurse for today, came in to start Sylvie's NG tube at around 10:00 am. The stethoscope test failed. So did flushing it with fluids. This falls into the category of OH SHIT because it means the tube isn't working and I could only think of one remedy which was to replace it. Sylvie's had 5 NG tubes in 9 weeks. That is not good. Not to mention, she's officially traumatized by it. If there is ONE thing that Sylvie will remember from this whole ordeal, I can guarantee that it will be the NG tube. Once again, I was wrong. Dr. Halpern and the whole team made rounds. Sylvie's platelets went from 12 to 192 but her hemoglobin was still under 8 so Sylvie would need an additional transfusion today. I asked them point blank regarding what kind of surgery Sylvie they recommend Sylvie having since if she is to be added to a donor list, I am under the impression that it needs to happen next week when Round 4 chemo begins. And I mean, we desperately want to know as well!

**Just want to throw out there that I think Sylvie could use some A+ blood since she's been getting at least one transfusion weekly lately. Thank you again for everyone who has donated blood or platelets!

Moments after the flock of lab coats departed, Dr. Halpern, Ellen (Advance Practice Nurse) and Linda (nutritionist) returned and I already knew what was coming... They had talked amongst themselves and to Dr. Harris and wanted our consent to put in a Gastric Tube ("G Tube") in her abdomen because the NG tube really shouldn't be used long term, clearly it's not working well, Sylvie is traumatized by it and perhaps not eating as a result of it and lastly, because she has months of additional treatment. Really, how could one argue with that? They said that all under-three-year-olds get the G Tubes because the kids can't be force fed but Sylvie's tumor had been too large initially to insert one. They all think Sylvie will go back to eating once there is no longer an 8mm piece of pvc running down the back of her throat, esophagus and into her stomach. Again, can't argue with that. Two things come to mind when I think of gastric tubes: 1). My beloved grandmother during her final month getting a G Tube which was a sign of bad things to come and 2). The Ag School cows at the University of Wisconsin that had "windows" sewn into their abdomens so that you could observe them ruminating.

The tube is surgically implanted and sounds like yet another disgusting medical apparatus that we will have to learn how to use, clean and trouble shoot.

They haven't told us when Dr. Valda will perform the procedure; definitely not tomorrow though.

Today therefore was the first time Sylvie has swallowed oral medication in 8 weeks! Let's just say it took Amy pinching Sylvie's nostrils and squeezing her cheeks like Alfalfa on The Little Rascals to get her to ingest grape-flavored Tylenol.

My parents came by and were amazed and impressed when Siobhan stopped by with another doll, this one with a G Tube in its tummy. Previous teddy bears have port-o-catheters surgically implanted in their furry chests. I'm not sure if the dolls are for the kids or the parents.

I ran home and picked up Sylvie's BFF Samantha at 4:30 to bring her back to the hospital. They were psyched to see each other and for about 15 minutes, actually sat side by side together in bed until Sylvie made Sammy move and took her coloring book. Typical Sylvie although she actually apologized later. I ordered Samantha macaroni and cheese, chicken noodle soup, mashed potatoes, carrots and a banana in the hopes that Sylvie might be inspired to eat a little after watching Sammy eat. Sammy was pretty stoked to be sitting in bed watching "Enchanted" and "Barbie Nutcracker," making glitter glue art projects, attempting origami and especially eating mac n cheese. The farthest I got with Sylvie was her saying that it smelled good. Well, it's a start.

After Samantha left, Sylvie's temperature shot up to 101.4 so the redisident asked for another culture. While Michael was reading My Little Pony phonics books over and over, Dr. Alba stopped by and again, I ran over to hug her because we spent many long evenings together and I like her very much.

Sylvie's asleep and I hope to be snoring on the bench shortly.

Easter Part Deux

After a fun afternoon filled with friends and family, Sylvie's temperature began creeping from 99 to 100.1 to 100.7 to 100.8 and then 101.4 and 102.7. The bloody nose returned and so did we to the Emergency Room.

At this point they know us and we know the drill, too. Joanie immediately escorted Sylvie and I to a room where she profusely apologized for our last time in the ER when she had left for the night and the other nurses had no idea what to do with Sylvie's port. In any case, today we had VIP treatment and Joanie wouldn't let anyone enter our room besides nurses Melanie and Grant (the 6'4" male nurse who Michael cracks tall-jokes to all night long). Sylvie's fever was up to 104. Joanie stayed 2 hours past her shift.

Sylvie's hemoglobin had dropped to 5.2 (11-14 is normal) and her platelet count was 12 (normal is 135-430 and Sylvie's was 80 last Thursday). Hence Sylvie needs both platelets and red blood cells pronto. Protocol requires Sylvie staying for 48 hours and if there is an infection, 14 days from when the culture first grew bacteria.

We're back in original Room 4 and Sylvie was pretty excited that Courtney is her nurse for the night.

Michael is taking one for the team and sleeping over.

Easter

We managed to balance both Passover and Easter this year around Sylvie's hospital visits including a 4th NG tube replacement while isolating ourselves from big family seders and/or Easter egg hunts.

While Sylvie was pouring through the Easter basket I carefully assembled for her, Michael and I alternated wiping Sylvie's face from the recurrent bloody nose. Her temperature was 100.3. She's clearly in pain and we clearly can't give her Tylenol w/ Codeine either because it could mask a fever.

I called the Tomorrow's Childrens clinic hotline and Dr. Appel quickly called us back. He said that since Sylvie is due in clinic tomorrow morning at 9:30 that our goal today should be to stay out of the Emergency Room. Miraculously, Sylvie's temperature dropped to 99 so for now, we can stay put.

Chopped Liver

Yesterday I got another call from Dana, the advanced practice nurse for Dr. Stephen Dunn, who is the Division Chief of General Pediatric Surgery and of Solid Organ Transplantation at duPont Hospital for Children. She called the week before but I have been in a "my kid might not need a liver transplant!" mood and had not returned the call. In addition, I was still recovering from Thursday's bloody nose episodes and trifecta of grossness that had Michael and me running around frantically searching for clean sheets, mattress pads, princess dresses, diapers and wipes early Saturday morning.

Dana said that Dr. Dunn would be reviewing Sylvie's CT-scans in the afternoon and basically wanted to introduce the medical team at the Nemours Children's Clinic at the Alfred I. duPont Hospital for Children in case Sylvie will need a liver transplant. It became immediately evident to me that Dr. Dunn's team are definitely experts in a). pediatric liver transplants and b). hepatoblastoma tumors.

Dana congratulated us on the great CT-scan report and Sylvie's low AFP levels. Alpha feta protein in the blood is a tumor marker and is not something that your doctor would regularly check for. When Sylvie was first tested for it and prior to treatment in February, her level was 506 nanograms/milliliter. After 2 rounds of chemotherapy, the number dropped to 8.09.

Dr. Dunn and his team have performed 100 pediatric liver transplants since 2000 with a success rate of over 98%.

I had been a little confused because when I would do the unthinkable and search online, I would see "1 YEAR SURVIVAL RATES...5 YEAR SURVIVAL RATES" and quite frankly, I have been under the impression that Sylvie's cancer is curable and therefore too scared to ever ask this simple question:
WILL SYLVIE HAVE A NORMAL ADULT LIFE?

And Dana answered this scary question by saying that if Sylvie has a liver transplant, the procedure is CURATIVE. She also used the words FULL LIFE EXPECTANCY although there is a chance that as an adult, Sylvie might need another liver transplant.

I almost cried on the phone. Really, Michael and I have never asked this question to Dr. Harris or our medical team at HUMC.

Something I found very interesting is that because Sylvie's cancer was metastatic, even with a liver transplant, there is a [small] possibilty that could return. Therefore the risk of reoccurence with a liver resect versus a liver transplant is basically the same. I had been under the false impression that 'new liver' = no chance of cancer. Dana also told me that standard protocol for hepatoblastoma tumors is 4 rounds of chemo following surgery of any kind. That kind of blows but it's helpful just knowing that.

We talked about live liver donors (i.e. me) versus cadavers. Again very interesting. There are pros and cons to both.

We will know this week if the recommended course of action is resect versus transplant.

Did you know that liver transplants cannot swim in public pools, ponds or lakes?! Me neither but another good reason to not join the Graydon Pool this year!

Happy Passover

It frustrates me that I cannot condense my 3-4x a week trips to both Town & Country "regular" pharmacy and the compounding one around the corner. It just isn't possible. Fortunately since Michael and I continually screw up how far in advance to call in a special order prescription (all of Sylvie's), the hospitable staff now call US to see when we will pick them up.

No sooner than I was contemplating when I could resume working between the NG tube, the shots, the pharmacy runs, the hospital trips and the accounting, I was administering Sylvie's magnesium despite her protests and the NG tube came right out of her nose! We were equally shocked although I admit, I was very annoyed at myself and at the thought of having to go to the hospital today when we will be there tomorrow by 10 am. I had a Passover Flourless Chocolate Cake to make! So I called the Reuten clinic and all of our regular APNs (advance practice nurses) were unavailable so of course they told me to come in.

Begrudgingly we got in Blue Car although truth be told, Sylvie was excited at the prospect of sitting in the big bed and watching movies. I asked Michael to call the clinic again while I was in transit just to double check that it was absolutely necessary for us to come in and have the tube replaced. No sooner than we were a traffic light away from HUMC, he called me on his taxi driver's borrowed phone to say GO HOME because Linda the nutritionist and Annette the APN said it was perfectly alright!

So... we turned around and drove home. And I made my kosher for Pesach cake. And put together Sylvie's Easter basket!

My parents came over and we had an abbreviated Seder. I hate not feeling totally committed or 'being present' but I was just so sleepy. Sylvie was very excited to see her grandparents and I hid little Afikomen presents around the living room for her to find with Grandma. I had hoped Sylvie might be inspired to eat matzoh ball soup or matzoh brei but no such luck. I expect she'll be ravenous in the morning.

Sylvie is sleeping in her big girl bed for the first night. She was so tired that she stopped complaining that she had neither Princess sheets or a pink blanket. She's clutching her stuffed dog named Disco (named after our Vermont veterinarian's Australian Sheepdog) and in her sleep, looks very proud.

Tomorrow is day 10 in Sylvie's regimen and she will have outpatient Vincristine chemotherapy in addition to having the NG tube yet again replaced. One of our friends who underwent intensive chemotherapy has been telling us what his experiences have been in regards to side effects. It helps us understand it a little better to hear an adult describe it as opposed to watching Sylvie wiggle her fingers in the air, touch her jaw or poke her leg.

Speaking of legs, Sylvie calls the Neupogen shots "leg stickers." I don't know where it originates from. I wish we didn't have to do it. It takes less than 15 seconds but she is so angry and upset.

Monday, Monday

Monday Monday, so good to me,
Monday Monday, it was all I hoped it would be

Sylvie can tell the different sounds that indicate whether I'm loading up a syringe of medicine, removing her neupogen needle from the mylar bag or if I'm packing up a bag to bring to the hospital. I try to be SO quiet but it doesn't matter!

This morning, Sylvie had an appointment at the Reuten outpatient clinic for routine blood work. I focus on all the fun things we get to do like watch Barbie movies, make glittery messes, bead necklaces, princess tattoos and so forth. That lasts long enough to get Sylvie into the car. There is nothing like driving in the rain listening to Audra Rox's "I Hope My Mama Says Yes" over and over and over again. I tried to sneak in Ryan Adams "Cold Roses" but Sylvie does not yet appreciate the musical greatness (no offense to my friend and fellow namesake, Audra). Sylvie asked if we could go to another Laurie Berkner concert or meet Audra again. We met Audra Rox the Sunday before all the shenanigans began. We got into a little discussion because Sylvie wants a hospital bed in her bedroom and there's no reasoning with her.

As usual, Sylvie went beserk on Carmen and we had to try and weigh her repeatedly. 20.1 pounds. Down a little. Then we went to the lab where they pricked her finger and honestly, she cried for about 10 seconds and then asked for Hello Kitty band-aids for Michael. Then, Sylvie wanted to go into one of the exam rooms with the big beds and watch movies and I coerced her into watching Barbie Rapunzel in the transfusion room.

She's a little celebrity in the clinic because if she likes you, well then, she REALLY REALLY likes you and is very chatty. She loves the advance practice nurse Annette which surprises me a little because she's had to do some uncomfortable things to Sylvie in the past. Suzanne who is our regular nurse came over and Sylvie really likes her despite the fact she's the one who puts the needles in her chest.

There was an Orthodox family sitting beside us. The littlest one, a boy around Sylvie's age, had an NG tube but was eating a tuna salad sandwich which perplexed me. A little stinky too I might add! His name was Mendel which is a favorite name of my friend Polina. I told her that if she ever has a son and names him that, he better wear body armour to school. She likes the nickname "Mendy" but our little neighbor today's nickname was "Mendoline." Like mandoline but different. Hmm. They looked at me strangely because despite what I think are my obviously Jewish features, Sylvie and I were playing with a glitter easter egg that we had just made.

I was a little annoyed because the reason we had to go to the hospital was because Sylvie's potassium level was low (3) last week AND they did NOT CHECK IT today. Oh well.

On the ride home, Sylvie insisted on hearing Suzi Shelton's "Road Trip" over and over and over. She threw her fists in the air during the chorus as if we were listening to Quiet Riot.

Bed of Roses

I am excited. I am VERY excited. Last night was my turn to sleep on Sylvie's floor and break in the Aerobed mattress that our friends Greg & Lisa gave us. It's really hard for me to accept help and when Greg pleaded with me last Monday it was with an open heart that I gladly accepted. Breaking in the premier pillowtop was a big event for me so of course I slept right through adding more Complete toddler formula to Sylvie's pump and we were both jarred awake at 6 am with the loud BEEP BEEP BEEP.

Michael and I are adding some ritual back in the little boss's schedule including (gasp!) bathing and tooth brushing. You'd think Sylvie was being tortured. It took us both just to get one swipe with the toothbrush.

Tomorrow we have to be at the Reuten outpatient clinic at 9:30 for labwork. Sylvie's potassium level was a little low last Thursday so they need to do some follow up. Hopefully it's no big deal. I'll be sure to bring lots of diapers and a change of clothes for us both as to not repeat last week's giant disaster.

As far as the rest of the week, we have at least two trips to Town & Country pharmacy, another to the compounding pharmacy, chemo on Thursday and the usual assortment of medicine, magnesium, Neupogen shots and potential for Tylenol with Codeine and/or Colace.

April Fools Part Deux

This afternoon, Michael and I went running at the Duck Pond. It's not a matter of being upstaged by Strides For Sylvie friends, family and neighbors at the Memorial Day run but right now, we're barely competent to walk the 1 miler pushing Sylvie in the jogging stroller.

I was taking a shower in Sylvie's room when I heard my dad pass the phone to Michael.
"Hi Marianne" (the advanced practice nurse
"Uh hmm"
"Um let me ask my wife."

I expected it.

We had a choice. Sylvie's hemoglobin was low and she needs a blood transfusion. We can do it tonight or come back tomorrow. I immediately suggested tomorrow and I think Michael was upset with me. It's not that I didn't want to go home as a family. More like I didn't want to put Sylvie through the ordeal of Emla cream at 8 am, car at 8:30, fit in parking garage at 9:00 am, 9:30 insert port needles, 1 hour for Benadryl, 3 hours for blood transfusion. I can't possibly go home tonight only to spend most of tomorrow back in the outpatient clinic. So instead, Sylvie and I are spending one more night in Room 10 where she'll receive a blood transfusion while she sleeps. I know that Andy donated blood last week so perhaps Sylvie is getting some A+ NJ lawyer blood this evening. If tomorrow Sylvie asks us for a Sierra Nevada, Ribeye with white rice on the side and a cannoli for dessert and starts yelling "I OBJECT!" at the nurses, then we will know for sure.

Sibel had already packed up some of our belongings in the trunk so I ran down and retrieved my ceramic mug, Tazo Chai tea, Anthroplogie bowl, granola, lemon juice and Udo's green stuff. Trust me, if I didn't have all that, I might wind up eating 5 packs of Oreo minis and 3 Cozy Shack vanilla pudding packs.

Fortunately we can go home tomorrow morning before rounds.

April Fools

This is what Sylvie's favorite nurse, Katie, wears when administering chemotherapy treatments. Sylvie's third round of chemotherapy is going pretty swiftly. She's finally feeling well enough to be bored, want to leave the hospital and finally, be nice.
Whereas Dr. Harris did not get the same warm reception yesterday as he did the prior day, Sylvie is very chatty with the hospital staff. Her movies of choice during this particular hospital say are a rotation of 101 Dalmations, Enchanted (Uncle Garrett knew just what movies to get Sylvie!) and Barbie Nutcracker.

Michael slept at the hospital last night and I went home around 7:30 to get some sleep. I was so tired that after settling into bowl of tomato bisque and this week's Gossip Girl (my guilty pleasure!!!) I fell fast asleep. I woke up at 3:30 since it was the most uninterrupted sleep I'd had in days and saw a text from Michael that said, "Now we know what major vomiting looks like. Yikes." Sylvie did her Linda Blair interpretation while the nurse ran in to administer Zofran and Michael tried to remove Sylvie's pink polka dot dress despite Sylvie's protests "Mom wouldn't do this!!!"

Michael gave me my [late] birthday card yesterday that is comprised of a really sweet note written on the "Big Ups" hip hop trading card that I once gave him as a part of a set. There is a picture of a figure skating pair that says beneath, "Big Ups on landing that triple axel." Well big ups for Michael cleaning up vomit last night while I slept.

I'm waiting for Dr. Harris and the team to make their rounds. Of course Sylvie is fast asleep which means they'll stampede in and piss her off. They're so excited with her prognosis that they don't really mind. After 5 minutes of Psycho Sylvie, she calms down and returns to her normal self. Yesterday Dr. Harris said he wanted to check with Dr. Valda to see if there was a chance that they could do a "simple" (his word, not mine) liver resect which to means seems to be on the complete opposite end of a liver transplant. I know they sent the CT images and reports to Dr. Dunn in Delaware but I'm going to ask him if they can also send to Children's Hospital of Philadelphia who have one of the biggest pediatric liver surgical teams.

To go from "L I V E R T R A N S P L A N T" to "simple liver resection" in 7 weeks is, as my college roommate Heather said, a medical miracle and quite an achievement. Let's wait to see what the doctors say because I don't want to raise my hopes. Then Heather asked me if I still sleep on my back with my hands folded across my chest. I told her for the most part, yes, but in the hospital or on Sylvie's floor, I put a pillow beneath my knees and sometimes a lavender pillow over my eyes to block out the lights.

Sylvie has her third day of inpatient chemotherapy at 5 this evening and we can go home after.

Michael and I are determined to get back to some 'normal things' together and if the weather is nice this weekend, we're going to take Lucky for a hike.

Obviously it's been very difficult managing all our household stuffs for here and Vermont but I have good news to report: After two weeks, our friend Lee in Stowe finally [humanely] trapped the giant skunk that made a home beneath the mud room causing havoc and stench with the family who rented the house. Last summer we called it a "cute baby skunk." Au contraire mon frere! Lee had been planning to release Pepe Le Pieu behind the police department which we all agreed was a bad idea. Pepe is now happily roaming around the von Trapp's so the hills will be alive with the smell of Mephitidae Carnivora.

Strides For Sylvie

Run or walk to honor Sylvie and raise awareness and money for the Tomorrows Children’s Fund at the Ridgewood Run on May 25th, 2009

Ann Chase, Andy & Catherine Karas are organizing a team to participate this year's Ridgewood Run on Monday, May 25, 2009 to honor Sylvie. The Ridgewood Run has established itself as the must-run road race in the NY-NJ-Connecticut area on Memorial Day. The North Jersey Masters (NJM), the premier running club in Northern NJ, has been the organizer of the race since it’s inception in 1976.

Our team,"Strides for Sylvie" both honors Sylvie and will raise awareness & funds to support the Tomorrows Children's Fund. Tomorrows Children’s Fund is a charitable organization that was developed by parents of children with cancer and blood disorders at Hackensack University Medical Center Children's Hospital. The Tomorrows Children’s Fund addresses the critical needs of families facing the anguish of this disease by working with the medical staff of the Tomorrows Children’s Institute to provide:
• State-of-the-art medical care
• A warm, healthy, and loving atmosphere for children during their inpatient and outpatient treatment
• A wide range of services to relieve emotional and financial stress
• Funding for research on childhood cancer and serious blood disorders

You can see more about this wonderful organization at http://www.atcfkid.com. Every single day Sylvie, kids from newborns to age 21 and their families benefit from their kindness, generosity, programs and support.

We welcome all friends, family and neighbors who would like to be part of the team and raise awareness and funds for a great cause and most importantly cheering Sylvie on!

The Race organizers have graciously agreed to provide us with tent space on race day where Team Sylvie will gather. Each of our team members will also receive a $3 discount per entry. In addition, they are in the process of determining which organizations will receive proceeds from the race and they are considering Tomorrows Children's Fund per our request. We hope for a positive response shortly.

We are also making up commemorative t-shirts and bracelets and will provide details/request orders on those when they are available. They will also be available at the tent on race day.

A few logistics that will be helpful:

Race Registration:
Online registration is now open and available however the only way to receive the Team Strides For Sylvie discount of $3 per entry is to register manually and indicate clearly on the registration form that you are participating on Team Strides for Sylvie (I would just write it in next to the event) and write a check for the entry fee less $3.

To register by mail, send the form and check to:
North Jersey Masters
P.O. Box 56
Ridgewood, NJ 07451

Registration in person is available at the Ridgewood YMCA on Oak Street.

Race Preparation:
Anyone registering who would also like to particpate in training runs should notify Catherine (Kitzchy).

Donations to Tomorrows Children's Fund:
Donations to Tomorrows Children's Fund can be made directly to the organization via their website (www.atcfkid.com) under "Donations", please indicate in the space provided "In Honor of" Sylvie Hughes. In addition, we will be collecting checks made out to Tomorrows Children's Fund on race day.

Event details:
The day itself offers events for all skill levels, as well as entertainment and refreshments. Strollers/Baby Joggers are only allowed on the Fun Run/Walk:
The Ridgewood Run/Walk is being held on Monday May 25, 2009
The schedule is as follows:
8:40 - The Kessler Foundation Wheelchair
10K
8:40 - 10K Runners in corrals
8:45 - Park Ave BMW 10K
10:15 - Park Ave BMW 5K
11:15 - Valley Hospital Womens Mile
11:40 - Valley Hospital Mens Mile
12:00 - Ridgewood YMCA Fun Run/Health Walk Mile

More information is available at http://www.ridgewoodrun.com/

-audra-