Three's a Charm

Yesterday, Sylvie asked if we could pack her brand new set of hardcover princess books from superfab Auntie Jodi in Los Angeles and bring them to the hospital in addition to her cupcake blanket. Michael and I have avoided saying the word "h o s p i t a l" around Sylvie and are confident she came up with this idea independently. In the meantime, I was sneaking around the house packing up everything we would want, need or enjoy at the hospital for as few as 3 days and as much as... well who knows this time. What we do know though is that Sylvie has been feeling great. She's been happier, sillier and more active than in a long time.

I was looking forward to Sylvie's being admitted to the hospital for the first time via the Reuten outpatient clinic instead of the Emergency Room. Sibel and I put Emla creamon Sylvie's chest and covered it with Glad Press'N'Seal prior to leaving the house. Emla is a numbing agent and it takes an hour to work. When we arrived at the hospital, Carmen immediately invited us into her room to take Sylvie's vitals. Sylvie weighed 23.8 lbs which is a great weight gain. I was beginning to think that pretty soon OJ the Cat might weigh more than Sylvie. Suzanne, the nurse, was ready to insert Sylvie's two port needles into her chest so we went to an exam room and were met by Yoomi, the Japanese college student volunteer who plays music for Sylvie. I always get a kick out of seeing Yoomi playing a rosewood Martin guitar for the children. Sylvie loves Yoomi. Yoomi apologized for her heavy Japanese accent which I told her was really of no challenge to us. Then I let her in on a little secret: Sylvie loves Asian women. It's actually kind of funny. Her head turns when she sees the other Japanese student volunteer. So while Suzanne dug the needles that look almost like brass nailheads into Sylvie's chest, Yoomi strummed away and a Barbie movie played on the TV overhead.

*** BTW did I mention that Sylvie's port sets of metal detectors and store security devices?! ***

Immediately after, Sylvie was back in action and not the least bit mad at Suzanne. We headed down the hall to the music room where the ratio of adults to Sylvie was 5:1. Siobahn, who is Sylvie's favorite Child Life worker from Tomorrow's Children, lead all of us through the usual toddler repetoire-- songs, parachute, bells and balls. Sylvie was positively happy and Siobhan's face lit up with excitement, too. From there, we moved across the hall for Sylvie's favorite words, "ART PROJECTS!" As usual, we made a mess with glitter and beads. My former demon child had finally turned a corner and couldn't possibly be any happier. We moved onto the playroom where Sylvie and read one book after another until the great explosion of 2009. Honestly, Sylvie was close to being potty trained so I'm not used to poop explosions anymore (although one on Saturday rendered her brand new princess nightgown biohazard waste) but let me tell you this was repugnant. It was everywhere. On the floor. On my fancy jeans and just dry-cleaned sweater. On Sylvie's dress, socks and shoes. Luckily Sibel was there because I couldn't move without making it worse. I was paralyzed somewhere between the Hungy Hungry Hippo and Play-Doh. Sibel grabbed two biohazard bags which we have become up close and personal with since they first appeared on the top shelf of our refrigerator with medicine and needles stuffed in them. One for the garbage. One for our clothes. Immediately following the great clean up, Sylvie was tired so back we went to the exam room where I thought it was a sign that the Ting Tings were performing on Yo Gabba Gabba. After Sylvie gathered up strength and boogied on the exam table, she watched The Nutcracker Barbie DVD and waited for transport to take us upstairs.

Annette is the advance practice nurse who we work with in the outpatient clinic. Sylvie was happy to see her and clearly forgot Annette's three attempts at inserting the NG tube last Friday. We went over Sylvie's labs which were GREAT. Her ANC was 9080 which is phenomenal especially considering Sylvie was neutropenic last week. Sylvie's hemoglobin is still less than 9 so she will most likely get another blood transfusion this week. Thank you again to all our friends and family and friends of friends who have donated A positive blood. Annette kept repeating how incredible Sylvie looked and was acting. We began talking about Sylvie's CT scans and she said that organ tumors in young kids grow very fast. The word 'fast' is meanless to me until Annette said that Sylvie's tumors probably grew over the course of a few weeks, maybe a month. I was pretty shocked. That's crazy talk! Annette also said that Sylvie should fare even better from the chemo since she's physically in such better shape. Here's hoping.

Finally we made it upstairs where my parents were waiting for us. Sylvie was a little diplomat, saying "hi" to her pretty nurse friends (much to their pleasant surprise). We settled into Room 10 which looks out on the helipad. We are so close to it that I think the window will rattle should one land. I will have Sylvie saying "Chopper" by the end of the week. We're also facing due south so not only is it very bright but the room is also in line with Teterboro Airport. When the planes fly low overhead to land, they cast a huge shadow that literally darkens the room. It's as if a pterodactyl is flying overhead.

My parents bid adieu and Michael arrived from work. Sylvie overheard me telling him that I imported the MGMT and The Ting Tings albums into iTunes (thank you Greg!!!) and moments later Sylvie was singing "I miss the catch if they throw me the ball, I'm the last chick standing up against the wall... they call me Stacy...Joliesa...that's not my name!" I wish I had my Flip video camera.

Afterwords, I ventured to the family lounge to call my office. Michael came rushing in and said that he had great news. Dr. Harris dropped by to examine Sylvie and brought with him very heavy artillery: The Michael Harris Funky Chicken Dance. Michael said that Dr. Harris began dancing and singing like a crazy rooster and had Sylvie laughing her ass off and blinking her new princess flashlight in sync with his squawks. Even Sibel said it was pretty insane and I was bummed to not have witnessed such a sight. To recap, Dr. Michael Harris is the Director of the Tomorrow's Children Institute for Cancer and Blood Disorders at HUMC and not the kind of man you'd expect to see clucking like a bird and waving his arms in the air. But mission accomplished. Sylvie and Dr. Harris are now officially friends.

The greatest news of the day is that Dr. Harris said Sylvie's CTscans could not have been any better. They're fantastic. Dr. Harris said he can feel that Sylvie's tumor/liver is even smaller since his last exam 8 days ago and that with two more rounds of chemotherapy to go, there is a chance the tumor could get small enough for a 'basic' resect instead of a liver transplant. He has reached out to the transplant surgeon, Dr. Steven Dunn at the Neumors Foundation/DuPont Hospital to review. In addition, Dr. Harris and Dr. Victor Valda who is the Chairman of Pediatric and Adolescent Surgery at HUMC are meeting with the radiologist to review the scans again, too. There is some question as to whether the tumor visible on the left lobe even existed or if it was an extension of the enormous tumor on the right lobe. I hope that makes sense. It's all good none the less!

Sylvie finally fell asleep. Gina, the night nurse, gave her Zofran to combat nausea and about half an hour ago, started the Cisplatin drip. In 4 hours she'll administer the bright red Doxorubicin.

Look tomorrow for information on Team Sylvie and the Ridgewood Memoria Day run!!!

No News is Good News!

When we walked into the Reuten outpatient clinic on Friday for Sylvie's appointment to have a new NG tube inserted, she was a little superstar. Word traveled fast about Sylvie's great CT scan results. Dr. Halpern walked past us in the waiting area and he was really beaming and thrilled to see us. Shortly thereafter, Annette, an Advanced Practice Nurse, and Suzanne who is Sylvie's day-to-day nurse in the clinic, inserted the new tube which was it's usual horrific procedure. I promised Sylvie that after, she could take her pick of going to the Princess Store, the Toy Store, the Book Store or the Birthday Candle Store. Since it would only be noon when we left and Sylvie's blood counts were okay, we were "allowed" to go to a populated place as long as it was off hours. We took advantage of this and within 10 minutes after leaving Hackensack University Medical Center, Sylvie was perched on a pink horse on the carousel at the mall. She looked so happy and proud. I was too. I also dodged the strange looks from the other moms and grandparents who couldn't help but notice the yellow plastic tube coming out of Sylvie's right nostril, taped across her cheek and hanging down her back.

It was great being home for the weekend reunited as a family although It takes a lot energy, patience and creativity to keep Sylvie entertained considering she neither eats, naps or walks... Michael and I tag-teamed it because honestly, we needed to take naps ourselves! In addition, Sylvie constantly moans that she's hungry however she gags every time she tries to swallow. We've tried everything-- waffles, pancakes, eggs, toast, gummy bears, soup, yogurt, ice cream, cupcakes, you name it.

Unfortunately, Sylvie had to skip her friends' birthday parties this weekend, even her BFF Sammy, because they have the potential to create germ warfare in Sylvie's body. One of my friends apologetically confessed she was a little scared or concerned about having a play date and potentially exposing Sylvie to germs. Honestly, I was thrilled to hear her say it because the germ thing is a VERY big deal. On the other hand, it's so important for Sylvie to be around her peers, so we need to find a balance. I put together a bunch of photographs for Sylvie to have in the hospital and she constantly stares at the picture of her in school sitting in a circle with her classmates and teachers. She told Michael that she misses school, too.

My friends Cindy and Adam came this afternoon and Sylvie was in rare form. it was the happiest we've seen her in a LONG time. Sylvie showed them all her tricks and after lunch, we were all dancing to her favorite song by The Ting Tings. Michael was amazed by the 14 million views on YouTube of which I told him that Sylvie might personally account for one hundred of them. Sylvie was mesmerized by Adam's funky dance moves and even let Cindy dance with her to Laurie Berkner tunes.

We're home until Tuesday when Sylvie will be admitted into the hospital for the third round of chemo.

Feel Good Vibes

Taking Sylvie to the radiology department in the main hospital is always hellacious. She is a little lunatic, everyone else we've ever been wheeled in next to is at least 70 years older than Sylvie and the hospital staff LITERALLY cry when they see Sylvie wrapped up in her pink blanket. Then they tell us how sorry they are and that they will pray for Sylvie. So that's how the morning began!

When we returned from the CT Scan we were greeted with the first good news of the day. They were going to give Sylvie her chemo immediately and then we were going home! And soon! Kristen was already dressed in her hazmat gear with syringe of Vincristine in hand (in addition to Neupogen, Tylenol with Codeine and Magnesium). You can't help but feel like you're breaking out of jail. Luckily Michael was with us at the hospital because we had to pack up Sylvie's belongings pretty quickly. Ellen who is one of the Advance Practice Nurses came by to go over Sylvie's outpatient medicine schedule and confirm we'd be returning Tuesday morning. Sylvie's ANC (Absolute Neutrophil Count) rocketed up from 80 on Tuesday to nearly 1000 today, too. Sylvie played with Ellen a bit and then Linda the nutritionist. They were shocked because over the past six weeks, Sylvie was nothing short of psychotic whenever they come near. Upon departure, Ellen said Dr. Harris would call us tomorrow to discuss the scans however she returned 10 minutes later VERY excited.

They just got the CT Scan results and were busting at the seams to share them with us (not to mention we wouldn't sleep a wink had they not told us!!!) so it's with the utmost joy, relief and confirmation that Sylvie has responded really well to the past two rounds of chemotherapy over the last six weeks.

1. LUNG NODULES ON LEFT AND RIGHT LUNGS ARE GONE!
2. THE BIG TUMOR ON HER RIGHT LOBE (formerly 8.8 cm x 8.3 cm and almost completely replacing all the liver tissue) HAS GREATLY DECREASED IN SIZE TO 7.4 CM X 6.4 CM.
3. THE TUMOR ON HER LEFT LOBE IS NO LONGER DEFINITIVELY IDENTIFIED. THEY CAN'T FIND IT!!!
4. LYMPH NODES TOTALLY NORMAL. NO FURTHER SPREAD OF CANCER.

Michael and I cried and hugged each other. We are happier than anyone can truly ever imagine. Sylvie still has a long road ahead of her with two more rounds of chemotherapy beginning on Tuesday and then some sort of surgery. I'm hoping we get a clearer picture from Dr. Harris tomorrow but if not, I can sleep better knowing that Sylvie's condition has improved so greatly. We drove home elated. Had a little incident in the car with the ND tube that is now no longer operating so we have to run back to the Reuten outpatient clinic tomorrow morning to replace it. Sylvie has been sleeping since we exited the children's hospital parking lot. I'm sure there will be more twists and turns but right now, we are celebrating Sylvie's victory.

Thank you for your strength, shoulders, prayers, meditations, energy, healing powers and positive vibes! Sylvie's recovery is a team effort and we are grateful to be in your hearts and minds.

Waiting in Vain

Last night, Sylvie had to have a flow dynamics test of her port. I'm not sure of the exact name but essentially, a radiologist injects dye into the port to see why it's not functioning properly. Sylvie has a small blood clot which the doctor said will probably be reabsorbed by her body but there's a teeny chance it could travel to her lungs so they're keeping an eye on it for now. This is probably the best case scenario because on the flip side, it could have been a big clot, port malfunction and/or surgical replacement.

Right now, we're waiting for the transport folks to bring us to radiology... Sylvie is going beserk because 6 week's of not eating has finally caught up with her. She is screaming that she wants to leave the hospital, go to the book store, the toy store, etc. "Get my jacket!!!!" "Can you put on my shoes for a second." She can't eat until after this morning's set of three CT scans: Chest, Abdomen, Pelvis.

Sylvie's Complete Pediatric Formula was replaced by apple-flavored Barium last night. Hence the cries for milk, bananas and gummy bunnies. It's heart-breaking. She has been awake since 3:30 am and is pretty much insane. On the other hand, I'm a zombie. I had to threaten Sylvie with the good old remote control last night. It's my last resort. There's only so many times I can juggle all 12 My Little Pony "I Can Read" books, assorted coloring books, Play-Doh, stickers and story books. It's one thing to be home and say "no" but another thing when I'm trying to sleep near enough to be hit with a flying Ariel or Snow White or Sleeping Beauty doll thrown by Sylvie from less than four feet away. Sometime around midnight, after I exhausted myself making blue Play-Doh spaghetti, Sylvie looked at her baby doll and said "Baby's hungry. Let's give some spaghetti to Baby. Oh no, baby threw up." I'm frowning; you can too. On the positive side, I like that she's projecting how she feels on her doll. It's the second time she's done that. The previous time, she talked about baby's tummy ache and that it was all better.

The outcome of today's CT scans will most likely determine what kind of surgical procedure will be the most effective and safest for Sylvie. It will also confirm the efficacy of Sylvie's aggressive chemotherapy regimen that includes Doxo, Cisplatin, 5-FU and Vincristine. Sylvie is scheduled to return to the hospital on Tuesday for the beginning of Round Three.

Back in Room 4

One of the convenient things about your child having cancer is that when you pull up to the "Paramedics Only" parking area directly in front of the Pediatric Emergency Room, the security guards do not chase you away. And, since it would be very dangerous for a neutropenic* kid to sit in a waiting room with potentially sick people, the hospital staff immediately whisks your family to a private room. They call it an 'isolation room' but sounds a little scary to me and I like comparing Hackensack University Medical Center to the Ritz Carlton, so to me it's a garden view superior room with 3 meals a day plus a minibar stocked with Gatorade, Kozy Shack pudding, jello (mom does not go near gelatin!!!) and fresh bagels. It's our third time in the ER since February 11. Sylvie said, "Mom, can we go upstairs to the big bed and TV?"

The oncology kids are admitted two ways: If it's early, we can go to the Reuten outpatient clinic. If it's after 4 pm, we have to go the through the Emergency Room. This has been our route all three times. Despite what I imagine to be lots of children entering via the ER, we continue to be amazed that the staff appear perplexed about accessing Sylvie's port. The head nurse in the ER, Joanie, worked in pediatric oncology for 5 years so we completely trust her. She inserted the upper and lower port needles while the other nurse looked on. Joanie left for the day and we were left in the shaky hands of two nurses far less experienced. After they drew blood twice, the upper port stopped working which is not uncommon. Sometimes a little blood clot forms like a little flap inside the port. Hence, you can get fluids in but cannot get blood out. Or the whole thing gets blocked. We had been told to expect it.

However, the last thing you want is to overhear is nurses talking each other through the procedure before trying to stick pins through your kid's chest. Sylvie had Michael pinned to the bed and he looked like he was going to have a heart attack as the nurses talked themselves through the procedure while they hid behind the curtain. I went outside and told them it wasn't happening. Before leaving the house, I had asked if a nurse from the Reuten outpatient clinic could come but they were gone for the day. I asked for a nurse from Ped Onc to come downstairs but they were unavailable, too. Trust me, they were plenty happy to not have to go near Sylvie and her port. We refused to let them reaccess her port in the ER since Sylvie was getting admitted anyway. Finally the ER attending pediatrician, Dr. Nina Gold, came by and told them to administer tPA. tPA, tissue plasminogen activator, is a thrombolytic agent better known as a very expensive clot-busting drug. Handy fact, tPA costs over $2,000 PER DOSE! They tried it twice over the next two hours and it did not work. We watched Dora episodes on Michael's iPhone and a nurse brought in a cornucopia of Princess items so Sylvie was really pretty comfortable. She will inevitably fall asleep on either Michael or me when we have to go to the bathroom badly.

Fast forward, Sylvie is back on 5E, Room 4, otherwise known as the FREEZING room. Ally is down the hall in the "Honeymoon Suite" and it's like nothing has changed at all. Except... we were psyched to see a brand new Toshiba DVD player in Room 4E! Jackpot! I also noticed that www.google.com is now blocked by the HUMC server. Good thing they don't know about www.dogpile.com or I wouldn't be able to look up things like "neutrophils" and "tPA."

Sylvie's fever never even reached 102 but it's high enough to keep her in the hospital for 48 hours. We don't have the results of the blood cultures yet. Just when I was complaining about the barium and 3 CT-scans tomorrow, now it is no longer our problem. Sylvie's ANC count (Absolute Neutrophil Count) was actually a little higher last night which is a good thing and no signs of a fever this morning. That being said, it's still super low so Sylvie can only be around 100% healthy people and no trips to the candle, book or toy store. Her mouth sores are returning and this time we know to ask for around-the-clock morphine.

It's Wednesday so Morag the bead lady dropped by to make Sylvie a necklace. Sylvie stared in awe at the little ziplock bags of sparkly beads. I told Morag that we'd see her next Wednesday for sure. Katie is our nurse for the day and Sylvie has been really playful with her. Clearly Sylvie has fogotten what Katie looks like in her royal blue paper scrubs and face shield when administering chemo drugs. Sylvie asked Katie if her doll to get heart monitor stickers and even reached up for Katie to hold her.

Sylvie's next round of chemo, which is inpatient is scheduled for Tuesday. The team just made rounds-- those who haven't examined Sylvie's tummy in the past 12 days are truly amazed at how the tumors have gotten smaller, how her abdomen is less distended and in general, how much better Sylvie looks. Dr. Diamond said that if Sylvie doesn't run a fever today, we can go home for the weekend.

Today's is Sylvie's BFF's birthday. Sammy is turning 4 and is the reason why Sylvie loves princesses so much. Sylvie asked me yesterday if we could get her a birthday cake. She wants to call Sammy later today to wish her a happy birthday.

For now, it's back to Princess Movies, Dora the Explorer and Barbie while we settle into our routine back in Room 4.

It is what it is. Story of my life. If we were mad or upset that Sylvie was back in the hospital we'd drive ourselves crazy. That being said, it was great being home for 12 days and I look forward to the next time we can go home together as a family.

*The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common.

101.1 & 101.3

Sylvie seemed a little more irritable than usual last night and this morning. We were up almost hourly and Sylvie ended up sleeping in the family room although I told her that the TV was tired and didn't work. We got up at 7 am and her temp was a lukewarm 99. Michael gave her some Tylenol with codeine after she complained about her mouth hurting. Now is when the mouth sores return.

I just got back from the pharmacy and took Sylvie's temp again. Unfortunately two diff thermometers said 101.1 and 101.3 so we are packing bags and checking into floor 5E.

Bummer.

Got Blood?

My mom, who I love, has asked me a few times if Sylvie has any blood "on tap" at the blood bank. I keep telling her to not say "on tap" because the sound of it makes my skin crawl. Having read 12 vampire books since January and at least a dozen previously, I imagine two things:
1). The Got Milk? ads but with Got Blood? instead and Sylvie with a blood moustache.
2). A dingy bar with lots of different beers on tap, on of them for A+ blood.

I will say that the blood she received today was definitely from a directed donor, so thank you whomever it belonged to! Ironically, my niece Jackie was trying to donate blood again today but her hemoglobin was too low to donate (12.3). Sylvie's hemoglobin this morning was only 6.1 which I believe may be lower than it was when this whole cancer thing was diagnosed 6 weeks ago.

After an exciting Sunday filled with family, friends and making dyed Princess eggs, today was major let down. We arrived at the outpatient oncology and hematology clinic at 10 am and Sylvie was NOT a happy princess! It started off okay when Carmen weighed Sylvie and she was 23.6 lbs (up from 23.1 last Thursday). A small triumph. We went across the hall for the lab technician to draw blood and the pre-requisite Dora and Hello Kitty Band-Aids. I asked them to check Sylvie's magnesium level since she upchucked it several times last week. From there, we went to the play room and read books for a while. A short time later, Annette, the advance practice nurse, dropped by to confirm that Sylvie needed blood. They asked if I had put Emla numbing cream on Sylvie and I had not because they never told me to do so although I brought it thinking we could apply it as needed once we were checked in. I was a tad upset because now they were going to stick a pin right through her chest without anesthesia. Good thing they checked her mag level because it's half of what it should be. See-- Mom's know best! That being said, now we have to double her magnesium supplement which means giving her either 4 ml 4x daily or the "preferred" 2 ml 8x daily. If I had to administer magnesium every 3 hours in addition to all the other fun stuff, I might shoot myself.

Once Sylvie had her pre-transfusion Benadryl, she passed out on my chest and I got to read about half of "My Horizontal Life: A Collection of One-Night Stands" by Chelsea Handler, eat an entire Toblerone chocolate bar and drink some Chai. Naptime ended when the nurse, Suzanne, started the blood and Sylvie went apeshit. I mean nuts. Sylvie was totally inconsolable. I imagined Dr. Steele and the nurses outside laughing at me. Finally Siobhan from Child Life came in with Princess, Dora and Barbie movies. After nearly 20 minutes of insanity, we settled into "Barbie and the Magic Pegasus."

Just when I thought that doubling Sylvie's magnesium was challenging, one of the scheduling peeps tracked me down to talk to me about Sylvie's CT-scans on Thursday-- Abdomen, Pelvis, Chest-- which of course, I knew nothing about.

I guess the good news is that Sylvie's chemo on Thursday wraps up Round Two. And Team Sylvie is so thrilled with her tumor shrinkage that they are eager to do new scans. It poses a logistical nightmare though. I'm sure most of you have had a CT-scan with contrast where you have to drink barium and get an IV during the procedure. Now imagine doing this on an almost-three year old who is not eating or drinking anything and has an IV port in her chest. I was handed a gigantic bottle of apple-flavored barium with "easy" yet IMPOSSIBLE instructions and was totally bewildered. The average adult would gag drinking so much of it. On the bright side, thank goodness it's not an enema. I would have to draw the line there. That is one thing you will not catch Michael or me doing. I think Sylvie would bite off our fingers. Just for giggles, here's our schedule Wednesday night through Thursday. I am reminded by the proverb "You are never given more than you can handle":

Weds:
9 pm- Run barium through ND pump for 3 hours at nearly double the current speed.

Thurs:
4 am- 7 am. Repeat
6:45 am. Apply Emla cream and Glad Press 'N' Seal to Sylvie's chest
7:15 am. Leave for Children's building
7:30/7:45 am. Nurses access Sylvie's port
8:00 am. Get back in car and drive over to main hospital building.
8:15 am. Check in to radiology department and start IV.
8:30 am . THREE CT-Scans.
9:30 am. Drive back over to Children's builiding
10:00 am. Check in for chemo

OK looking at this, Michael and I have decided the family Hughes is not capable of pulling this off. Stay tuned.

In ode to the 15 year anniversary of the movie "Reality Bites," I'm listening to the soundtrack. Highlights including Juliana Hatfield, World Party and the Indians. Lowlights include Dinosaur Jr. although Michael absolutely loves J. Mascis and is mad I wrote that. I'm officially giving Michael slack because Mascis's new record entirely benefits an Indian not-for-profit organization and has a song called "Lokah Samastah Sukhino Bhavantu” which is a Sanskrit mantra meaning “May All the Beings in all the Worlds Be Happy” and that's not such a bad thing afterall.

Slow Runner

No sooner than we put Sylvie in her crib last night, she proceeded to vomit the magnesium and Bactrim all over her pillow wedge, favorite flower sheet and handy mattress cover that we took from NYU Hospital when Sylvie was born. Somehow the princess nightgown remained unharmed. Note to self: Space meds apart! It's a little tricky to manage the different medications on the weekends because Sylvie is likely in pain and therefore getting Tylenol with Codeine and also needs Bactrim antibiotic 2x daily. This in addition to the magnesium 4x daily and neupogen shot 1x daily. "Luckily" Sylvie isn't constipated or we'd have give her Colace and Senekot, too. Let's not forget about the ND pump. Sylvie ideally needs between 850-1000 calories daily therefore I am constantly calculating how much food she's getting hourly. I admit, I freaked out a little on Thursday because the pump had been off for the 4.5 hours we were at the hospital and I was determined for Sylvie to get her minimum intake. It's inexcusable if her weight loss is my fault and I take this very seriously. If she was feeling better, the fewer calories would make Sylvie hungry. Not the case right now. Worth noting that Sylvie's medical team is not as concerned as we are. Our parents have offered to babysit but it's hard enough for us to maintain the daily schedule so we kindly decline the offers.

Inasmuch as it seems like we have our shit together and a daily routine perfectly mapped out, I can assure you we are flying by the seat of our pants most of the time (even though I write a minute-by-minute schedule in a day planner). Gross things happen all the time and they never seem to be less scary or disgusting. We argue over the smallest things just because we're too tired to think of better ways to communicate and hope deep down in our hearts that soon this will be behind us and our life will get back to 'normal' sometime in the near distant future.

I volunteered to sleep on Sylvie's shagadelic carpet last night but Michael and Lucky had already settled down with their pillows and blankets. We've had many offers for loaner spare and air mattresses (thank you!) but mentally it signifies permanence to me so I'd rather tough it out. At about 4 am Sylvie began to heave in her sleep so Michael slowed the pump down. At 5 am she had a bit of an explosion from the other end. And at 6 am she was wide awake, in pain, and got her first dose of Tylenol with Codeine for the day. By half past 6, Sylvie and I went downstairs so that Michael could get some sleep. I snuck out for yoga and when I got home, Sylvie wanted to go to the book store. I gathered our stuff yet Michael and I were a little wary because Sylvie really looked like she was going to throw up and I'd rather have that happen in the house than... in the car... in Bookends... Happy to say it all went well. When we got home, Sylvie wanted to take Lucky for a walk in her 'bumpy' stroller so off we went! We first cruised past Sammy's house to see if she was out and about (nope). 40 minutes later we got home and my paranoia about calorie counting set in. Sylvie spent the rest of the day chillin like a villian on the couch watching Princess movies, playing with that Princess computer, an interactive Princess book and numerous coloring books. You'd be amazed at how much a toddler can do while never leaving the sofa. My parents dropped by to see Sylvie while I made ribollita in the kitchen. My dad's fraternity brother's son is the head of oncology at the Children's Hospital in Atlanta and worked on the chemotherapy protocol that Sylvie is on (the introduction of a 4th chemo drug whereas most children only get 3). Small world. (And my friend Jon Baum from college went to high school with Dr. Harris's daughters!). I digress. After Sylvie fell asleep, I went out for a run. A very slow run! I figure that if our friends and family are going to be running Memorial Day weekend in honor of Sylvie, well then I have to be able to run more than a mile, too! Worth noting that many of the yoga postures I practice almost daily may be very good for my heart but it is quite different than running three miles! I knew that I was running somewhere near Dr. Rosen's house and if I had my Blackberry with me, I would have texted him to see if he could let me use his bathroom and then drive me home.

Every time we see a glimmer of the old Sylvie, it makes us hopeful and INCREDIBLY happy. My friend Debbie gave her yesterday a crazy musical Yo Gabba Gabba microphone and a plush character from the show and Sylvie did some funky dance moves with her hands. We used to play music, watch videos on YouTube and dance around every morning and evening so the house seems a little dark not having done that for 6 weeks. As a test, I put on The Ting Tings "That's Not My Name" this afternoon and Sylvie lit up while my mom and I did freaky synchronized dance moves in the family room. Tomorrow if we're feeling adventurous, I'll put on the Cyndi Lauper "Girls Just Want to Have Fun" video which is a close second place behind The Ting Tings. Worth noting the British hipsters cover Altered Image's "Happy Birthday" on the Yo Gabba Gabba soundtrack.

I just boiled a dozen eggs so that we can tie dye them tomorrow with Granny Annie. Sibel, being Turkish, has never heard of this and I have never done it myself (the hard-boiled egg on the Passover seder plate has always been a plain white egg!) so this will be interesting. You'd think I live on Mars, but today was the first time I saw white eggs tattooed with a logo!

First Day of Spring

Sylvie and I awoke to the first day of Spring with snow flurries outside. I was situated on the floor of her tidy bedroom staring out the windows. I was pretty wiped out. Sylvie's stomach was churning so loudly at around 2 am that it woke me up. I added more Complete to the loudly beeping pump no later than 3 am. At around 4 am I had to put on the purple chemo gloves and change a stinky toxic diaper. Ditto at 7 am when we finally got up. Sylvie wanted to go outside, despite the weather, so we bundled up and took Lucky for an early morning walk. We got home in time for the morning dose of magnesium and also Bactrim which Sylvie gets every Friday through Sunday. Sylvie was officially mad at me, pointed at the door and said, "MOM, GET OUT!"

Later in the day, Michelle and Scott dropped by. We went for another walk around the neighborhood. Sylvie sized them up, decided they were not nurses and let them play the funky coach-shaped Cinderella computer game that Linder had given Sylvie in the hospital. Shortly therafter, Sylvie opened their present which was a cornucopia of crafty items from metallic pipe cleaners, polka dot felt, ribbons, glitter, glue, funky hole punchers, stickers and more. The skilled hands of surgeon Scott's hands can make a pretty fine heart out of a pipe cleaner. Sylvie gave it to Samantha later this afternoon and said she made it herself :-).

We officially made it 1 week at home.

Glitter Girl

I didn't want to bore anyone with a repeat of our at home rituals over the past two days, so I thought I'd wait to share with you our first outpatient chemotherapy treatment.

Sylvie's been great all week so we took full advantage of the Spring-like weather. Tuesday morning, we went to a music and movement class at the outpatient clinic. I wanted Sylvie to learn that not all trips to the hospital involve needles and doctors. And I wanted to get rid of Sylvie's bad rap, too! Class was ok. It's not Music for Aarvarks but Sylvie definitely cannot be in potentially germy classroom right now. The ratio of Child Life/ Social Workers to kids was 2:1. The room has incredible gear from guitars galore to percussion instruments that I have never heard of before. Sylvie was obsessed with the Remo "Ocean Drum" and a set of Suzuki tone chimes. There was one other little toddler in class, Jacob. He was decked out for St. Patrick's day in a tall hat and green shirt. He was running around like crazy while hooked up to an IV pole and getting chemo. At one point, Sylvie said, "I don't need that (pointing to the pole), Mom. When my tummy hurt we went to the hospital, but now it feels better." Sylvie definitely understands what's going on. One of the social workers nodded in approval towards me and I'm confident she reported back to the staff that Sylvie is not always a heathen.

Tuesday afternoon, the ladies (Sylvie, Sibel, Lucky Dog and I) went for a stroll. Sylvie was bundled in the jogging stroller and we cruised down the block. First stop, the Beinstein's where the kids were playing outside. Sammy B asked what happened to Sylvie and I told him that her tummy still hurt. That seemed to work. Eli and Samantha came over to say hi and made pictures with sidewalk chalk while Sylvie looked on. I couldn't tell if she was sad that she was not on the pavement scribbling with them but more likely, she felt like a little princess in her puffy pink jacket and fleece Dora blanket (a present from the night nurses after a diaper explosion) looking on. After a few minutes, we continued around the neighborhood and Samantha joined us on her fancy princess scooter. At this point, our posse grew to Sylvie, Sibel, Sila, Samantha, Lucky Dog, baby Bella and me. We took up the whole width of the street. After our final destination that included zooming the stroller over the cracked sidewalk on Valley View/ Heights which is a Sylvie favorite, we made a bee line to Casa Hughes so Samantha could go to the bathroom. This may seem very boring to you, but it was a momentous occasion for Sylvie and me. We got home in time to hop into Blue Car and pick up Michael from the train.

Wednesday morning, Sylvie got up around 6:30 am and within half an hour, demanded to go outside in the stroller and take Lucky for her walk. She was pretty defiant so I got her dressed and strapped in. By 7:08 we were passing Patrick's house although I didn't see any lights on. It felt like old times juggling dog and Sylvie before 7:30 in the morning. I even got Sylvie to sit in her high chair for the first time in 5 weeks although she didn't eat a morsel. We played toddler computer games (Starfall, Zoobooks) and made beaded necklaces.

Garrett came out from the city just at the moment where Sylvie's tube leaked everywhere and we had a fashion emergency. Garrett got Sylvie a sparkly shirt that said "Princess" on it and eyed him warily as if to ask,"Who is this handsome man with great taste in kids clothes?" Garrett & I ran out for lunch at Natalie's (and cupcakes to go) and then to Town & Country compounding pharmacy to pick up more magnesium and 5 more pre-filled Neupogen* syringes. If you haven't been there, it's the real deal. Pharmacists wearing surgical scrubs, goggles and masks making medicine behind walls of plate glass windows.

*Neupogen is a natural protein known as granulocyte-colony stimulating factor (or "G-CSF") and Sylvie needs a shot daily between chemo treatments until her neutrophil counts come back to normal levels. Each shot costs about $300. Once again, glad to have good medical insurance! The shot hurt me more than it hurts Sylvie. After I give it to her, I wind up stroking her forehead apologizing to her repeatedly.

Today was a chemo day. I try to keep all hospital appointments for 10 am to avoid my screwing up and arriving either too early or too late. Sylvie got up around 7:30 and we wrestled her into a cute Tea Collection dress and leggings. I don't want the hospital to think Sylvie wears the same clothes day and night! I can't seem to get the green glitter off her face from Monday's visit. I fixed Sylvie's breakfast: Tylenol with Codeine and magnesium. Around 9:15, I put Emla cream over the location of Sylvie's port. It's a numbing agent and will diminish the pain from the needle insertion. Instead of putting an adhesive dressing over it, the nurses recommended Glad Press 'N' Seal wrap. Go figure. We sped to the outpatient clinic at HUMC and Sylvie was pretty upset. I tried to get her attention off the pending appointment and onto "Little Einstein" that was playing on the 50" Sharp Aquos flat screen in the waiting area. And we read My Little Pony books, Sylvie's new flavor-of-the-week. A few minutes later, we were whisked in by Carmen who took Sylvie's vitals.
23.1 pounds. Down from 24 pounds on Monday. This is very frustrating for me. We went back to the waiting area where we waited... and waited... and waited... 30+ minutes. Finally Annette came and brought us to an exam room where we met with Dr. Steven Halpern (not related but knows and even looks like my sports doctor Brian Hapern). Dr. Halpern was thrilled to see Sylvie's progress. At this point, it's become very clear to me that there is a huge number of folks at the hospital who know every little detail about Sylvie's hepatoblastoma tumors and condition. They are, in essence, Sylvie's personal cheerleading squad. The entire port activation (i.e sticking needle into chest), drawing blood and injecting Vincristine took no more than 5 minutes. Annette said we did not need to stick around to get the results of the blood test. After the chemo we promised Sylvie that she could make art projects so we immediately followed Siobhan to the arts & crafts room. Bribery with glitter glue works wonders with Sylvie. Sylvie spent 30 minutes making a mess with glitter, glue, beads, lanyard cord and even hugged Siobhan goodbye. It's more about Siobhan being the "toy lady" but this is progress and Sylvie sure loves glitter! Sylvie made Michael a pretty hot bead necklace on a neon pink cord that I am hoping he will wear to work tomorrow!

Sylvie's white count is still 9.2; it has not bottomed out from her 3-day chemo binge last week. Her platelets are 164,000 which is also "normal." Sylvie's hemoglobin dropped from the 9's to 8.1. Normal is above 11. In an adult, we'd be symptomatic at 8.1. Not a toddler, though. We have an appointment for Monday at 10 am and if her hemoglobin drops any lower, which you can pretty much guarantee, Sylvie will get a transfusion. The next chemotherapy is scheduled for Thursday, March 26.

CST

Having been in-patient for 30 days and nearly $250,000 later, today was Sylvie's first day being treated as an out-patient.
The outpatient facility is located in the Don Imus-WFAN Pediatric Center for Tomorrows Children and is comprised of examination rooms, treatment rooms and then the 'fun' rooms including a massive playroom, a video game room (for the older patients), an art room (a cornucopia of fun), a music room (I noticed several guitars including a fancy Martin!, a cello, a giant percussion arrangement, a fancy electric piano and even some recording gear) and a virtual classroom.

Until reading an article in The New York Times about a guy with prostate cancer, CST was the time zone in Madison, Wisconsin, where I went to college. From this point forward, it is Cancer Standard Time. Nothing is fast. Few things are timely. And lots of waiting. I mean lots. I'm very Type A and obsessive over time so CST is quite an adjustment. And, I really have nothing other to do but wait. And wait. And wait some more.

Sylvie had an appointment for "labs" which means checking her vital signs and drawing blood either from the port or in today's case, from her finger. They monitor the counts to see if Sylvie has an infection, needs blood or platelets and is 'healthy enough' for chemotherapy. The appointment was for 10 am and I estimated in advance the time to check in, fill out paperwork, wait, dig out Sylvie's insurance card from my overstuffed fancy wallet that I just noticed has magenta glitter glue all over it. I paid the $30 copay in advance just to hurry things along. Then the nurse would take Sylvie's vitals, draw blood and send to the lab. From there, I also built in time for when the lab work would be returned to the clinic, assuming everyone would be out to lunch. Therefore, I did not expect to get home before 2 pm. For a blood test.

Sylvie was pretty apoplectic when we pulled into the parking garage. "I feel good! My stomach is better, I want to go home," she yelled from the back seat. For the first 20 minutes she was very focused on getting the heck out of there. When the nurse took Sylvie's blood pressure she was so nuts that it was 160/100 which believe you me, is not right for a toddler. We finally gave up with the blood pressure. Sylvie's weight is down to 24 pounds and luckily no fever. Siobhan from Child Life (social worker who focuses on the kids and not the parents) was waiting for us and Sylvie seemed relatively happy to see her because basically, she comes with toys. We meandered to the playroom although I was pretty skeptical because there were two women in their mid-50s dressed like clowns. Indeed Sylvie hated them and I was a little jealous watching three other toddlers run up to them squeal with joy. Not my Sylvie! After fifteen minutes of fun, Siobhan asked me if the lab knew we were there. I tell you, I have no idea how the place functions, no one told me anything about the lab procedure and now I felt like I personally added a quarter of an hour to our stay there not to mention Sylvie's misery. We quickly went over to the lab-- the place looked familiar, but really, I had no idea we were supposed to get a piece of yellow paper and wait on a chair outside. One, two, three and we were done. It was 10:48. Back to the funhouse. Sylvie was eager to get busy so we went to the art room where I don't know who was more amazed, me, Sibel or Sylvie at the cornucopia of art supplies. We started with glitter & glue and made messy pictures. I was proud that Sylvie cleaned up after herself. From there, Sylvie made a bead necklace and dazzled Siobhan with her pretty awesome small motor skills. And we finished up making Play-doh geometric pieces that looked like Dwell Home fabric patterns. I dare say, Sylvie seemed pretty happy with the endless supplies and things to do. Sibel and I had glitter all over us. Sylvie's long eyelashes sparkled with green glitter, too.

In walked Dr. Harris who is the Director of Tomorrows Children's Institute and Chief, Pediatric Hematology / Oncology. Sylvie wasn't supposed to have an exam today but Dr. Harris was genuinely excited to see Sylvie, having been out the previous week. So we followed him into an exam room where we were met by Annette who is another advanced practice nurse. Sylvie was pretty nuts but not as bad as before. Dr. Harris was overjoyed when he felt Sylvie's abdomen. Literally, he was jumping like a little kid and he's at least 65 so watching a silver-haired doctor in fancy clothes and shoes jump for joy is pretty cool. He said that Sylvie's tumor has definitely gotten a lot smaller and isn't in the lower left part of her abdomen anymore. Her blood counts are all in line with her treatment. Hemoglobin is under 9.5 so hopefully it will hang in there long enough to not need a transfusion before Thursday's chemotherapy. We talked about Sylvie's progress and Dr. Harris said that if Sylvie spent 4 months either in the hospital or lying on our couch at home, it would not surprise him based on her very aggressive chemotherapy regimen. Therefore when I told him that at 8:30 last night, Sylvie insisted on going to the "candle store" (really Kings in Midland Park), he was very pleased. Linda Rossini the head nutritionist came in and we talked about weight/food. Of course Sylvie mentioned at this point that she wanted pizza but it was a trick, I tell you. Anyway, they aren't concerned about her weight since she's getting nutrition from the ND tube. Linda also pointed out that Sylvie was pretty well behaved. I hope she shares that with Dr. Steele.

From there we left and when I looked at my watch, it was 1:00 pm. Yeay! Ahead of schedule. We went for pizza and I'm sorry to say that Sylvie said the pizza made her mouth hurt and wouldn't eat it. We got home around 2:20 from our adventures and Maeve from Montessori Learning was in our driveway with an incredible "Happy St. Patrick's Day" poster featuring shamrocks painted green by each of Sylvie's classmates. And her very own Irish Soda Bread with cranberries!!!! Despite being Jewish and of Eastern European descent, I have to say I am feeling so Irish this week!!!! Sylvie is even wearing her special St. Patrick's Day t-shirt today. I think Sylvie was very happy to see Maeve, too, and I hope it wasn't a shock to see the lethargic, skinny, balding Sylvie in my arms. Shortly thereafter, I gave Sylvie a shot of Neupogen, her magnesium and some Tylenol with codeine. Needless to say she fell asleep. One of my goals this week is to figure out how to post photographs within the body of this blog. It is not as easy as it looks!

Sammy and Catherine dropped by after dinner, Sylvie was pretty psyched to see them and gave Sammy the beaded necklace that she made earlier in the day. It's the first time she's given Sammy something and was very cute. Andy got home from his fabu trip and came by to see his "other wife" Michael and of course, Sylvie.

I set my watch last night for 3:00 am so that I could put more Complete in the ND pump and avoid the scary beeps. I slept through the alarm (shocker as I sleep like the dead), woke up just in time anyway, was so tired that I didn't put enough food in and was awakened at 5:45 with the screeching beeps. Sylvie said to Michael today, "The tube made noise last night and woke me up." I hope Michael sleeps on Sylvie's floor tonight. I might need to go to sleep right now or pretend (while he's at his "other wife," Andy's house. :-).

Saturday Night's (Alright for Fighting)

For my birthday yesterday, my mom gave me something in the pretty sexy category which I can mention because we're all friends here. She so desperately wants to try and snap me out of my funk and remind me there's more to life than Sylvie's illness. I don't think Sylvie would have appreciated it last night when I slept on the floor of her room but I love it, appreciate the message and anxiously await for our lives to return to normal. If I can let my mother-in-law root around my underwear drawer picking things for me to wear at the hospital over the past month in which she perfectly matched my t-shirts to my undergarments, then my mom can buy me lingerie too!

Nice segue... I'm still sleep deprived.

I never thought Michael and I would be excited about Sylvie fighting with us about bedtime but as Sylvie rose from the couch and her codeine haze at around 8:00 pm tonight and declared she wanted to paint a picture at her little yellow table with her green paint brush, Michael and I gave each other 'thumbs up' signals behind Sylvie's pink princess back.

Today was the most normal day we've had in over a month. Sylvie woke at 7, we moved from her bedroom to ours and hung out under the covers for a little while longer with OJ trying to sneak up along side.

Like yesterday and like tomorrow, the day was spent staring at the ND pump which is supposed to run for 20 hours a day, filling oral syringes with light pink Bactrim, hot pink Magnesium, orange Tylenol with codeine, clear Zofran. It's like having a newborn baby all over again and instead of worrying about feeding times, we're locked in to medicating times. If Sylvie actually eats food, she doesn't need as much food from the ND tube. We got a hopeful letter from Oxford that they may pay for the Complete liquid food if we provide them more documentation. So far Dr. Harris said in a letter to them that the cancer has made Sylvie anorexic (would not pay) and that she hasn't eaten a solid meal in 2+ weeks and would die without it (still won't pay). Each case costs $100 and I think at this rate we'll go through 2 per week.

Michael and I traded off with me going to yoga and him going to the gym. I gave him the task of going to both Town & Country pharmacies today. I think one of the cash registers should have a plaque in honor of Sylvie Hughes. While he was running errands, the home nurse dropped by and I officially gave Sylvie a shot all by myself today. I mean, Sibel had to hold her down but it wasn't that bad. Sylvie and I both survived. Shortly thereafter, Sylvie actually wanted to go outside so we bundled up and headed into the great outdoors. We were pretty excited to see Laura and Kate outside.

We had lots of visitors and well wishes today including neighbors who I had not personally met before and am now eager to get to know better. Sylvie even made a new friend! Linder came out from NYC and saw Casa Hughes for the first time. She brought a beautiful African Violet plant in a pink pot for Sylvie but my own little princess thought Lisa was a nurse and was very suspicious. Then Jen dropped by with the radiant baby Ellie and freshly baked Irish soda bread. Jen amazes me. She may not use her cooking skills often but she's a 3-star Michelin chef when she does. In the middle of the party (Sylvie soundly asleep on the couch), Karen from The Whole Child dropped by with more amazing recipes for Sylvie and her healing Reiki hands. The Karas clan came by mostly because Catherine wanted more of Ann's chocolate birthday cake (she sent me a desperate text message the night before for more cake!) followed by my brother, Caryn and Megan. Megan is such a sweetheart and wanted to snuggle with Sylvie.

Getting Sylvie to walk is an effort. She's a little wobbly and weak. In addition, the Vincristine causes her bones to hurt so we are very conscious of all Sylvie's movements. Dr. Steele suggested we give her Tylenol with Codeine at least 1x daily simply because there's no way Sylvie will not have some discomfort. When Sylvie was walking all of ten steps back to the couch after her late night painting session, she exclaimed "IT HURTS." Michael said, "Your legs?" Sylvie said "YES." I said, "Your stomach." She said "YES." I said "YOUR TONGUE" and she said "YES" again so I don't doubt that something hurts but I"m not sure what exactly.

For my birthday, Michael gave me a necklace that says "With the happiness held in one inch-square heart you can fill the whole space between heaven and earth." I love that he thinks that of me and if I read it each and every day, it forces me to think positively about myself and that I might actually bring happiness to other people, too. It's really lovely.

Date Night

We did it! We made it more than 24 hours at home!

I think I spent the majority of the day:
at Town & Country pharmacy on Ridgewood Avenue (picking up Zofran, liquid Colace)
at their compounding pharmacy around the corner (picking up 5 syringes of Neupogen)
on the phone with John Herr the head compounding pharmacist
with Mary the home nurse from Valley Hospital
adjusting the ND tube
adminstering medicine through the tube

I gave Sylvie Bactrim 2x, Raspberry flavored Magnesium 4x, Tylenol w/ Codeine 1X, Zofran 1X, Colace 1X and a shot of Neupogen. She was less than thrilled with me.

Tomorrow I have to run back to Town & Country (both of them!) to pick up syringe labels and more Complete in case we run out. I love that we have to appeal Oxford to get them to pay for the Complete since Sylvie hasn't eaten a meal in at least 2 weeks. They don't seem to be swayed by the fact she'd die without it.

Sibel and I gave Sylvie her first real bath in the tub in a month. Sylvie's lost about 2 pounds which doesn't sound like much but it's actually between 5-10% of her weight so she looks really frail. She did not enjoy the bath so we made it quick and had a failed attempt at tooth brushing. I know I'm expecting a lot for our first day home.

Then we picked up Michael from the train and Sylvie looked like a shriveled old man while she sat, head sunken into her neck, in her puffy jacket and oversized hat. When she saw her reflection in the mirror that faces her car seat, she asked me to remove it. That made me sad. As soon as Michael hopped in the back of Blue Car, however, she perked up and became silly Sylvie for the next 15 minutes. We chased Lucky in the yard, played our silly make believe games. I don't know who enjoyed it more, Sylvie or us.

The ladies Chase and Karas dropped by with birthday cake and good cheer. Samantha, who turns 4 next week, said to me, "Sylvie's losing her hair" and I told her that Sylvie's medicine to make her tummy better is making her hair shed but it will all grow back. Sammy replied, "Well, my hair doesn't grow either." Then Sylvie and Samantha colored on the couch like BFFs or sisters. Bella ran around like crazy. She quickly shot up and is so much taller than Sylvie. Then again if you look at the average Hughes family's height and the Chase's, it's pretty obvious!

We had two birthday cakes which Sylvie liked although it was Sammy and Bella who devoured the fudge and chocolate mousse.

Catherine told me that last night when Sammy got home from visiting us, she said, "I'm glad Sylvie is home so I don't have to miss her anymore." I couldn't have said it better.

We were supposed to go out and "celebrate" my birthday but our NYC dinner quickly became dinner locally. My parents were on standby to babysit but after tabulating the meds, the new NG lines, bringing all that crap upstairs and so forth, I freaked myself out from leaving the house.

There's No Place Like Home

Deja Vu! Once again it is Thursday and the family Hughes is settling into their new routine that includes setting up the ND Tube and flipping a coin to see who gets to sleep on Sylvie's floor tonight (me).

Today was a pretty uneventful day at the hospital however I did manage to have a lengthy and private discussion with Dr. Steele after yesterday's situation. As I mentioned I think she already anticipated the one-one-one but I made sure to let the nurse know as well as the resident on call that I wanted to have a private discussion with the doctor prior to rounds. Shortly thereafter, Dr. Steele who is the Associate Director of Oncology & Hematology and Marianne Mariniello who is one of the advance practice nurses that we deal with on a fairly regular basis stopped by. I wasn't used to being referred to as "Mrs. Hughes." I'm not one to mince words-- my 12 years working at Sony Music have unfortunately made me very forthright, if not confrontational. That being said, after I told them that I felt they were unfairly judging my parenting skills in front of an audience the previous day and grossly upsetting me they seemed absolutely shocked. They genuinely did not feel like they did anything out of line but did highlight one instance where I could definitely see their point.

Picture this if you will and hopefully I'll be descriptive enough that it will make sense:
Sylvie thrashing about, trying to hit the doctor, then pinching her and when unsuccessful, biting herself
Me: "Sylvie, it's ok."

Basically, I was trying to reassure Sylvie that everything was going to be okay. After saying about 100 times "No one is going to hurt you, everything's ok," I shortened it this time. Unfortunately, the doctors thought I was giving permission for Sylvie to hurt others or herself.

See what I mean? I can't fault them on that.

Dr. Steele said that fiery, strong willed smart kids are always a bit more difficult (especially as toddlers) and that her twenty-four year old son was like that. Not only had she read "The Spirited Child" like me but she took him to a developmental pediatrician and was ultimately told by his preschool teacher that he was a leader and would grow up to be either president or a gang leader. I let her know that Dr. Rosen and I had talked about the spirited stuff over a dozen times and were considering meeting with a child psychologist.

As it pertains to Sylvie's experience in the hospital, apparently it's taking her longer to adjust to the medical staff and they don't want to be less thorough in examining her just because she's a wild child. The most innocent cuts, bruises and bumps can be catastrophic to a kid with cancer. I blame Sylvie's mania on the Colorform-up-the-nose-incident and traumatic experience we suffered through at Valley Hospital last summer. Most importantly, Marianne said they wouldn't be going through all this developmental crap if Sylvie didn't have a very good prognosis and bright future ahead of her.

I felt a little better until Dr. Steele brought up the potty issue again. One day, Sylvie is going to take it upon herself and be potty trained and I strongly feel there's nothing Michael or I could do beyond the usual stuff that we've been doing for over a year to further speed it up. I took a deep breath and let it go.

Ultimately, we came pretty close to kiss and making up since we all have to play nice in the sandbox. Dr. Steele sort of praised my organic eccentricities and t-shirt logos (and that I practice yoga in the laundry room). She even came back at the end of the day to say bye and that she'd see us Thursday in the outpatient clinic.

Sylvie was definitely ready to go home and insisted on wearing her pink puffy jacket, tie-dye organic cotton socks and black patent leather party shoes all afternoon. She even got her Vincristine chemo while all dolled up. And off we went!

When we arrived home, I was overjoyed to find waiting for us a brand new Littman Electronic 3000 stethoscope, a present from my most favorite doctor in the universe! Don't be scared if I check your vitals upon entering my house in the near future. Michael made fun of me as I tried it out on myself first. He had better be nice or I might use it on him in the middle of the night. No longer will my ears rage out in pain when I go to determine if Sylvie's ND tube is in her trachea (BAD!), her stomach (GOOD) or duodenum (GOOD too). Actually, I hadn't heard the word duodenum since Zoology in college but will remember it as a great Scrabble word the next time I play (duo+ denum).

The Karas family girls stopped by with organic cheesecake and Sylvie seemed as excited as she could possibly be to see her BFF [until Samanatha began drawing on her princess drawing table!). Shortly thereafter, we carried Sylvie and her apparatus up to bed where I read "Splat the Cat" and she drifted off to sleep to the sound of the ND tube purring in the background. Sylvie's homecoming is a the perfect birthday present.

Prizefighter Sylvie

Sylvie is a champ! She made it throught night (so did Michael!) without getting sick although see definitely seems like she's working extra hard to deal with something funny going on in her tummy. I know it's unrealistic to imagine that Sylvie will not get sick from the chemotherapy considering it's the #1 side effect however I am pretty pleased that we have all been spared. Michael said that Nurse Jessica gave her some extra anti-nausea medicine last night.

They stopped the NG tube feeding and the Colace (for constipation) for the time being. Sylvie's Neupogen is being premeasured into syringes at Town & Country and Home Health is sending Mary back to our house on Friday so we can continue our hands on training. Or I should say Michael's hands on training because I can't be the only one administering a shot or Sylvie will hate me until she's at least 18!

The lovely nurse's aid dropped by today with a special present for Michael & me-- Puerto Rican coffee! We were talking the other day about how fantastic the coffee is in PR and I remarked to her how expensive Yauco Selecto coffee is at the Puerto Rican Coffee Importers stores in the city (Garrett mentioned it to me recently that it's over $20 pound although we have a small stash of it at home from trip last May to St. John). It was so kind and thoughtful of her to remember considering she leaves her home in the Bronx no later than 6:05 every day to drive to the hospital. Michael is going to be very happy too.

My friend Pam came out from NYC this morning-- she's a baby whisperer, a truly gifted parent and Sylvie has always loved her. Pam has two boys it was a treat for her to read My Pretty Pony and Princess stories :-). I realized it was Wednesday when the 'bead lady' paid us a visit. For the first time in a month, Sylvie was pretty excited to see her and picked out different pink and purple (what else???) beads for a necklace and bracelet. If you could see the treatment Sylvie gave her before, you would realize this is a small victory. I thanked her immensely and she told me the real pleasure is making parents smile. When she's not making beaded jewelry in hospitals for sick kids, she works for a big audio company that provides sound gear to broadway shows and touring bands (i.e. Van Halen, Lil' Wayne). Sylvie's asleep now clutching her necklace and her doll is wearing the bracelet. I think Sylvie and her baby doll have the same size wrists. Mine aren't much bigger either!

Sylvie's team of doctors, nurses, nutritionist, social worker, residents and so forth dropped by for rounds at around 11:15. Sylvie was about to fall asleep so the blinding light and presence of them was a little jarring to say the least. Sylvie is doing fantastic-- her tummy is down to 49 cm (from 54 cm) and they really expect us to go home tomorrow following chemo (I still doubt it). Otherwise, I have to say, it's been about 2 weeks since any of Sylvie's doctors made me cry and they had me so upset this morning that I thought even pacifist zen yoga teacher mom Pam was going to go ballistic on them. I realize that I don't have to like all of them. It's their job to make Sylvie better and my job to be Sylvie's mom. And I've mentioned here and there the minor altercations I've had with them and that they probably percieve me as being the hippie mom. So imagine this:

Lights, camera, action-- Sylvie is awakened from her near sleep and My Pretty Pony story by the overhead lights and Dr. Steele walking up to her and saying, "You're almost three. You can't hurt people." Sylvie was hysterical. I was also telling Sylvie that she can't pinch people; pinching and hitting is wrong and that we don't hurt people. Through this melee they did Sylvie's physical exam, changed her gown (out of the one-of-a-kind dirty princess gown no less!) and made her stand up. Again, I ask you that if you were Sylvie, would you be happy to see any of these people? Otherwise it didn't seem much different from any other visit from Sylvie's team during morning rounds. Marianne mentioned to me that they want to try using a "regular" diaper while Sylvie is getting chemo because it might wick away moisture better than the Seventh Generation hippie diapers that we, including Sylvie, are fond of. Sylvie's skin is excoriated from the chemo and of course, I'm happy to try anything, even if it means harming the environment with chemo laden Pampers. Nurse Katie dropped off a package and I hope Elmo isn't printed on them because Sylvie associates them with her friend Patrick's 'boy' diapers. They seemed visibly pleased that I didn't have an issue with it.

Not so bad, but prior to exiting, Dr. Steele addressed me directly and told me that I had to discipline Sylvie regardless of her having cancer... that she's very smart and highly verbal and if we don't address it, her next year will be even harder... that we will create a nightmare so to speak... Ellen and Marianne who I normally REALLY like told me how difficult their 3 and 4 year olds are... and if I didn't already feel like I was being attacked and pretty shell-shocked, Dr. Steele went on to say that I really should be potty training Sylvie since she's going to be 3 in May. I told her that a). if we hadn't been in the hospital for a month that I definitely would have potty trained her b). that Dr. Rosen and every single child development book says not to rush it and try around their 3rd birthday and most importantly c). that Dr. Harris specifically told us not to potty train Sylvie until after chemo is finished because we would not be able to be consistent considering Sylvie is getting fluids (and often food through the NG tube) 24 hours a day. I told them all that "non-negotiable" not an uncommon word to Ms. Sylvie Rose Hughes but that I'm certainly not giving Sylvie a "time out" while she's surrendered herself to a hospital bed for the past month. I later told the head nutritionist, Lynda, that Sylvie's always been a little strong-willed, that I've read "The Spirited Child" after my friend Ruth suggested it, that I didn't breastfeed Sylvie until she was over 2 because I personally wanted to continue and lastly, that Dr. Rosen and I have talked possibly a dozen times about Sylvie's, how do you say, headstrong behavior.

I completely understand that when Sylvie is home, we're should be trying to have as normal life as possible but we have only been home for 22 hours in which Sylvie slept most of the time so I have no practical application of this philosophy although it sounds reasonable to me. The zen mom in me didn't want to tell them to fuck off. But I was so insulted and hurt that I nearly cried. I wasn't in a position to defend myself either. They exited Sylvie's room and into the vestibule yet I think they overheard Pam consoling me so within 5 minutes the social worker who usually accompanies them came in to talk to me privately.

"Audra, I think they were not addressing your parenting skills directly because you and Michael are great parents, but they tell every parent of a toddler going through treatment the same thing." I thanked her but said it seemed like a direct hit on us, that I was very upset and also that she and Dr. Harris communicate different information. If indeed that is part of the repertoire which they deliver to all new parents of small kids with cancer, then they need to revise their schtick.

I was going to request Dr. Steele come back later today but would rather address the whole room tomorrow.

I called Michael later to tell him and let's just say he is not the zen warrior that I try to be! He did say on the brightside that at least they're talking about Sylvie's recovery. Damn I wish I had channeled that into my mind instead of getting weepy.

We've signed onto the program of getting Sylvie better. It's not about me or my feelings being hurt. Whether I was 36.995 years old or 2.83 years young, lying in a hospital bed surpressing massive nausea with a tube up my nose and 2 coming out of my chest and about to fall asleep and a barrage of people wearing lab coats barged into the room flooding it with light, put a tape measure around my waist, involuntarily removed my favorite shirt, and then lectured me about proper behavior, my first response might not be warm and fuzzy. Good for Sylvie.

And with that I'm going to Om and stand on my head in the laundry room waiting for the princess hospital gown to dry.

One Month Anniversary

Today is the one month anniversary since Sylvie's fateful trip to see Dr. Castillo followed by the Emergency Room and then admission to the Pediatic Oncology wing of Hackensack University Medical Center. Since then, she's been in the hospital for 28 days not including 22 hours home, completed one round of chemotherapy, eaten less than 3 meals total, swapped her long locks for a little bob, had one real bath, brushed her teeth once, watched and read Sleeping Beauty over 100 times each, . I've eaten about 15 Kozy Shack Vanilla Puddings, slept home 5 nights total, practiced over 150 downward dogs, read at least 3 Sookie Stackhouse books, 20 pages of the Ramayana and become deaf to the bells, alarms and whistles that sound all day and night. Michael and I continue to debate the nature of Sylvie's cancer, play the "what's worse than Sylvie's cancer?" game and stay up to date on all the household thing that need to be done and ultimately, paid for.

We've been nourished by our friends' incredible cooking, Sylvie's also been nourished by their A+ blood and platelets. Prayers and prayer groups from every single faith I can think of except maybe Jehovah's Witness have flooded the ethers with well wishes for Sylvie. Despite drawing the short straw when it comes to Sylvie having a rare freakish cancer, we are pretty lucky to have such wonderful friends and family.

Ann dropped by with bagels this morning and then Dr. Rosen came for a visit. Dare I say, Sylvie was pretty, dare I say, nice. I think if Dr. Rosen was wearing a stethoscope, it would have been a different story! My mom dropped by later and I sat in amazement as she gave Sylvie a container of rainbow sprinkles and a Ziplock baggie filled with pretzels which she devoured. It was the first solid food she's eaten in 10 days. If Sylvie wanted gummy bears at this point, I would give them to her.

Nurse Katie just came in wearing her crazy chemo repellent apparel which means that any second the Doxo will start running through her veins. It's a 15 minute "push" through the IV. After that comes the fun... Cisplatin which is known for colossal vomiting. Let the games begin! Sylvie already had the anti-nausea medicine which I guess helps a little?

Sylvie is back eating more sprinkles. This is going to be interesting. Michael is going to have FUN tonight when Sylvie becomes the missing member of GWAR and projectile vomits sprinkles. Lovely. Sylvie did not get sick at all from the Cisplatin last time and I'm obviously hoping for the same. I don't want to make light of the situation, am thrilled she's eating ANYTHING and secretly happy that I get to sleep at home tonight. I neglected to mention another curious side effect from the chemo-- hyperpigmentation of the skin. Sylvie's hands are dark-- as in they look a little dirty! I scrubbed them just in case they really were filthy (see first paragraph about hygeine) but Dr Steele said it's common and will go away.

Sylvie is super chatty right now, gobbling pretzels and picking out the pink sprinkles with her Pop Pop by her side. Katie and I are amazed at how vibrant and talkative Sylvie is.

Dr. Steele thinks Sylvie may even go home as soon as Thursday which I think is cautiously optimistic especially since it's nearly 5 pm and they just began chemo. That means Thursday's chemo will not start before 4:45 either so the liklihood that we are discharged at 7 pm Thursday night is pretty slim.

Happy Mondays

When I say that Sylvie has smiled and laughed more today than in a LONG time, like a pre-cancer time, it's an understatement. Michael and I have been having fun for the past few hours with Sylvie and keep glancing up at one another in amazement. She's laughing like a hyena. Except when the doctors and nurses come in. Then she turns into her psychotic mean little self.

Sylvie woke up last night at 3:30 when the nurse came in with antibiotics and then at 4 am when she returned to change Sylvie's [IV] lines. She did not go back to sleep. Since all rules are out the window right now, I put on the Ni Hao Kai-Lan DVD and she probably watched it for 2 hours straight. Sorry-- mom's need their sleep too! In addition, in anticipation of the onslaught of chemotherapy today, I wanted to be ready for anything.

Sylvie's team visited in the morning to say that her counts are still very good but they wanted to repeat (for a third time in a 7-day period) the ultrasound because there might be a blood clot in her liver which would need to be addressed before continuing further treatment. Chemo has been pushed back to Tuesday so long as Sylvie does not run a fever today. Despite Sylvie not having eaten a smidgen of food in well over a week, they are not concerned because of the 800 calories a day that she receives via the NG tube. I was concerned that she would forget how to eat but the nutritionist said that will not happen and not to be worried about it. They ordered more Physical Therapy for Sylvie to get her moving and grooving again. Sylvie's port bled a little bit but it doesn't seem to be anything serious.

I ran to the gym, ran on the treadmill and then ran back to the hospital while blasting the Afghan Whigs. I really wanted to listen to the new Ryan Adams mix I made on my iPod but Blue Car's Pimp-My-Ride stereo takes forever to scroll through artist names listed alphabetically by first name. SO, it was Adam and the Ants, Alkaline Trio or the Afghan Whigs.

Later in the afternoon, Dr. Steele dropped by and she was excited because Sylvie's ultrasound came back totally perfect.
Dr. Steele excited = Audra excited. Sylvie pinched her so hard that it will probably look like a hickey on her wrist tomorrow.

Following that, a massage therapist from Ho Ho Kus, Michael Schwartz, was offering complimentary massages to the moms of Ped Onc floor, so I headed downstairs to the outpatient clinic. What a treat-- my fused spine, hardware and lots of knots is no picnic. When I returned to the Honeymoon Suite, my brother Scott was reading a princess story to Sylvie while my parents hung out. Then, Siobhan from Tomorrow's Children/Child Life came and had Sylvie laughing in stitches. Shortly thereafter, Michael arrived from work and he and my brother cracked jokes about my getting a massage. I think, they said something on the order of "Do the fathers get lap dances on the second floor?" It's ok to laugh. It's cancer humor.

Next, Dr. Harris, who is the head of Pediatric Oncology, came by to say hello. He said that Sylvie's doing great and was happy to see her fighting spirit had continued for the past month. In 2 weeks we're going to do new CT-scans and make a determination regarding the surgical course of action. He said that Sylvie's chemo regimen is very strong for a 25 pounder and that if she spent the next 4 months in bed, it would not totally surprise him. In addition, the 5-FU caused horrible mouth sores previously so if they return, Sylvie will immediately start getting morphine continuously. That being said, he hoped we could go home perhaps on Sunday 3/15. I'm not counting on anything at this point.

One thing that bothers me a little are the placards adjacent to many of the common use rooms named in memory of deceased children who were treated here. It freaks me out and makes me sad. I wonder if Michael has noticed this.

Sylvie's wearing her custom-made princess hospital gown (thanks Ann!!!) and Sleeping Beauty socks (thanks Caryn!!!). She's playing with a new set of eBoo stacking blocks, hippie non-toxic nursery rhyme blocks and Play-doh in bed right now while watching Kai Lan yet again. It's no wonder why she likes it here.

Day of Rest

Not that anyone wants to 'lose an hour' but changing my watch and clocks before bedtime last night was painful. I'm storing sleep in preparation for the onslaught of round two chemo that is supposed to take place Monday through Wednesday. Michael's mom, Ann, slept at the hospital to give Michael & me a night on the town. Besides being sleep deprived, I don't really feel like doing anything remotely sociable. I know at some point we're supposed to 'get back to doing normal things' but right now, all those normal things still seem very trivial. I haven't watched any television whatsoever in nearly a month although our brand new TiVo has recorded all of my favorites. Michael is really into a show about jockeys on Animal Planet. I burned out on the channel but used to love Emergency Vets (I became a psycho letter writer when they treated exotic animals) and Animal Rescue (New York, Detroit, Miami-- I've seen them all).

Back to my story, we left the hospital after 7 pm. There is a point to this. Sylvie was pretty content with her princess movies and Grandma. Bells, whistles and alarms were kept to a minimum. Michael craved a big fat steak so we went to Janice Bistro in Ho Ho Kus and sat at the bar. After frequent trips there, the owner knows us, by sight at least. We ate sideways, cocking our heads to one another while we talked. Debated religion. I told him that I've prayed a whole lot more in the past month than in my entire life and thought about faith & religion tenfold but I'm really not sure who or what I'm praying to anymore. I do know all of our prayers are going to the same place and find comfort in that. Michael said he'd rather go to temple with me than to yoga class. I said fine because I like going to yoga alone anyway.

Back to my story (at this point anyone who ever lived with me and is reading this will call it an "Audra Story"). Prior to leaving the restaurant, the owner came up to us to see how our meal was and the ask the inevitable:
OWNER: You have kids?
ME (Michael totally silent): YES
OWNER: Great, a night out! (he has no idea)
Boy or girl?
ME: GIRL (sticking to 1 word answers. where's this going?)
OWNER: How old?
ME: Almost 3
OWNER: Wow, she must be a handful and keep you up at night
ME: YOU HAVE NO IDEA.

And with that, we shook hands and left. We sighed when we exited, happy to not have had to ruin his night and tell him about Sylvie. I was glad, however, he didn't remember the disastrous time we took her with us to dinner there and had to leave 2 minutes after our entrees arrived.

The morning comprised of yoga, walking Lucky, bumming out my neighbor Sandy who I hadn't seen in the 3+ weeks that I haven't been on the train in the morning. She reminds me exactly of Susie Greene (Larry David's manager's obscene wife on "Curb Your Enthusiasm"). If you watch the show, you'll know exactly what I'm talking about!

Sylvie's port makes a creaking sound that's created by the end of the insertion needle literally scratching on the back of the apparatus under her skin. It's not painful however it sounds worse than chalk on a blackboard and more like a cross between Morse Code and visitors from another planet.

Aunt Polina, Dina and baby Sydney (he looks like a Semour to me) came to visit and brought cupcakes from Magnolia Bakery and fancy candles. Sylvie didn't have the heart to kick them out because these are the creme de la creme of candles. Sydney's adorable. I forgot what Sylvie was like at 8 months old.

Polina has a way with words. When I told her about how nervous I was to hook up and use the NG tube and pump at home last Friday, she said "But I've seen you with a breast pump!" (Sorry Mom but I blogged about it on Kiwimagonline.com already!).

And when I told her that they put a bigger diameter NG tube in Sylvie (technically an ND tube), she said "So it's the difference between angel hair and lingini." Bucatini, I corrected her.

Sylvie was in a pretty decent mood today. We've been reading two new books from Pam & Chris-- "Bethany Butterfly" and "What Julianna Could See" which is actually a story that the actress Julianna Margulies's dad wrote for her when she was a little girl. Pam also gave me a new aluminum water bottle and a book called "The Ocean of Dharma" by Chogyam Trungpa (Pam knows my 'Leave No Trace' ethics and yogi leanings very well!!!!). Excuse me while I put a mysterious empty Poland Spring bottle that I found beside Sylvie's bed in the recycling bin.

Except for the continuous 102-103 fever, Sylvie is doing pretty well today. Blood counts normal, nothing funky in the blood cultures. Dr. Steele will make the final call regarding chemo tomorrow morning. Calling it an early evening in case tomorrow is an all-nighter.

Michael has challenged me to a game of gin while Sylvie watches The Little Mermaid III.

Honeymoon Suite

No sooner than we checked in to our room with a view of the helipad last night, I knew there would be a BIG problem. The DVD player did not work. So at 5 am we packed up our stuff and wheeled Sylvie over in her big CraftMatic Adjustable bed to what I refer to as the Honeymoon Suite. In all actuality, it's the isolation room with a private ante chamber for setting up IV lines, second hand washings or a sitting room as I see it! There is no doubt, this room is bigger than my single girl apartment on Second Avenue and 29th Street. Initially I felt guilty that we made such a big effort for a one-day stay at the hospital. However I was quickly informed by at least two doctors and three nurses that we're not leaving any time soon.

Catherine and I slept until 8 am! Sylvie slept in today, too, until nearly 9! She woke up, looked around and asked for her Princess balloons, teddy bears and pictures. I will run home soon to load up Blue Car. Last night Sylvie's fever climbed to almost 104; today it's hovering around 102.

For the first time, Sylvie said to me today, "Mom, my doll's tummy hurts." I asked her to show me where and she touched the doll exactly where her liver would be. Then she said the doll was feeling better. In a matter of 24 days, Sylvie's grown up a lot. I think she looks different too. Besides the thinning hair, her face looks much different. I cried while studying her face in the ER last night-- looking for signs of the old rambunctious, silly, goofy and adorable round-faced Sylvie and instead seeing a sullen, sad, in pain and scared little toddler.

I'm trying to figure out how to upload photos and videos onto PrincessSylvie. The iffy wi-fi at the hospital makes it rather difficult so if I'm home tonight or tomorrow night or the next night, I'll revisit. I have a slideshow ready to go, tried to set up an iLike music player and just got the most heartwarming video serenade from my friend Michael Grant. It's his first g-rated music video although it looks like he might be sitting poolside at the Playboy Mansion.

This would be the third Saturday that we're here so I'm trying to predict what's going to happen... doctor visit any minute now, volunteer doggie visits (goes very well), chaplain (not really into it right now), clowns (never EVER!). Sylvie's very focused on her new Crayola Color Wonder princess coloring book and won't let us look at it.

Room With a View

Room 5E-07 Ped Onc has a much better view than our previous room, 5E-04. It's dark out but I think the trauma center helipad is right outside our window so perhaps we'll get to see a little "ER" up close and personal tomorrow. I hate to imagine the noise it makes though. We lasted a whole 24 hours at home before having to return to the Emergency Room where we were admitted upstairs. The morning started off well. For one thing, we managed not to screw up the NG tube last night. Michael slept on the floor of Sylvie's room, and I slept in the guest room next door. At about 5 am, Michael woke me to put more Compleat food in the pump thing. And we managed to give Sylvie all her meds on time, too! We did have a situation with the magnesium again which resulted in a scene straight from The Exorcist. I'll fast forward through a boring and uneventful day until Mary the home care nurse from Valley Hospital came over. She helped me through some basic questions until Michael got home which correlated to the exact minute that Sylvie first felt a little warm. And warmer. And warmer. Two thermometers later, Sylvie's fever was nearly 103. After calling the Pediatric Oncology department, they has us put anesthesizing cream on Sylvie's port site and sent us to the Pediatric Emergency Room. To make a long story short, here we are again. The resident assured me there's no way we're going home tomorrow either. Lovely. we still hadn't completely unpacked from the past 23 days...

We're having a sleep over in Room 07. Catherine, Sylvie and I are reading Sleeping Beauty and Carlos was kind enough to find a pull out chair-bed for Catherine to sleep on (also means Andy and Michael are having a party on Wastena Terrace too).

It's nearly 11 pm and we're waiting for Sylvie's transport peeps to come because she has to have an ultrasound of her liver. Right now. I might fall asleep standing up leaning on her stretcher.

Home Sweet Home

We had been in the house for only 30 minutes before I had to call Gina in Pediatric Oncology with a dumb question about the feeding tube. It was essentially leaking everywhere which resulted in Michael carrying Sylvie and me following behind saying, "GROSS!" while holding a cup under the port to catch whatever was leaking. It really wasn't big deal.

Andy, Kitzchy and Samantha made a huge "WELCOME HOME SYLVIE" banner and arranged the biggest assortment of mylar Princess & Hello Kitty balloons that I've ever seen in the middle of our living room.

Just for the record, Sylvie did not want to come home. She was very content in her giant bed and TV. However she seemed genuinely excited to see Lucky and OJ who were equally thrilled to have Sylvie back. They eagerly await her uneaten meals. On that note, it's extremely important that Sylvie eats and drinks over the next three days because she will most likely not eat a morsel next Monday through Friday due to the chemo. The kitchen is stocked with all Sylvie's favorites including avocados, Applegate organic turkey breast, cous cous, cottage cheese, Greek yogurt and string cheese. I'm also going to start with the crazy high calorie, high protein yogurt and fruit shakes laced with pureed & disguised vegetables.

We were met by someone from Home Health who brought with an IV stand and dog biscuits for Lucky. He smelled like cigarettes. I practiced using the pump while Sibel followed along behind me.

Town & Country pharmacy delivered $100 worth of food in a can for Sylvie's NG tube, Tylenol with Codeine (for pain), Senna (for constipation), Bactrim (to prevent infection) and a numbing cream for me to apply before Sylvie gets her ports reaccessed next Monday.

It took the three of us to set up the NG tube and pump. The stethoscope which the hospital gave me is excruciatingly painful so I have to hold it in a wierd way as to not rip my ears. Then I have to pump some air into it and listen to make sure the tube is in her stomach. To be honest, 19 out of 20 times, I can't hear a thing. Somehow it worked on the first attempt tonight. Remember that phrase, "We're only given what we can handle." Well tonight I cannot handle that much.

Right now, Sylvie is asleep on the couch on a pillow 'wedge' with her pink blanket. Michael's alternating between Bill O'Reilly and ESPN while she sleeps beside him. He even bought [French] Kronenberg 1664 beer as a symbolic gesture. All those nights home alone and my husband has become a right winger. I am expecting our friends Sara & Paul to fly the Obama Air Force One plane, that I got their son Eli for his birthday, into Michael's forehead as their symbolic gesture.

We're not sure where the best place is for Sylvie to sleep this evening because it involves one of us either sleeping with her in the guest bedroom or sleeping on the floor in her bedroom. I am volunteering Michael for whichever one of these options because I've been up since 4 am.

Tomorrow, a home nurse is coming from Valley Hospital although I'm really not sure why. In an effort to be efficient and keep track of Sylvie's med schedule, I mapped it all out on the 2009 New Yorker desk calendar that my friend Cyndi gave me. Technically we only need to get through 3 days but being over-organized helps me deal with the fact that the last time the whole family sat on the couch in the family room together, she only had a tummy ache.

Nurse Hughes

Melanie, Sylvie's nurse for today, gave me my very own stethoscope and taught me how to blow some air in the NG tube and listen for it in Sylvie's stomach. That was after John from Home Health came to teach me how to use the mechanical pump for Sylvie's NG tube when we are at home this weekend for 18 hours a day(i.e. 5pm to 11am). I can't help but dwell on the the fact that if Sylvie was actually eating food, I wouldn't have to learn all this! Sterile water, syringes, IV bags and lines-- this is not my cup of tea! Ellen and I sat down and went over the protocol for being at home with Sylvie and what to do in case of the million kinds of emergencies that could easily happen. Reflecting on, "We are only given what we can handle," I have to say that I am reaching my limit.

Sylvie has accumulated quite a bit of stuff over the past 22 days so I loaded up Sibel and Michael with bags of books, crayons, stuffed animals and so forth. My dad is coming by in the morning to help with that as well.

By the end of the day today, Sylvie's neutrophils climbed to 2000 which is FANTASTIC.

I'm eager to get home but pretty terrified at the same time. It's one thing to manage an IV pole and stuff in a hospital room but in our house... it will be a challenge. Only a 3-day challenge though since Round Two of chemo begins next Monday. You know what they say, "Don't unpack your bags!"

I know we just finished one out of four rounds of Sylvie's chemo but since I've Googled "hepatoblastoma" about a million times, I thought I could start something new to freak me out like "pediatric liver transplant." The CHOP website is really factual and the Cincinnati Children's Hospital is thoughtful enough to list that the procedure costs between $150,000 and $200,000. I don't think Michael has looked this up yet or he's intentionally not mentioned it to me.

On that note, I'm going to unfold my sheets and blankets and hit the sack.

Homeward Bound

Great news. Sylvie's neutraphils are over 1000 which is amazing! Her hemoglobin is 9.6 which is passable, too. That being said the powers that be decided we can go home tomorrow and the only apparatus we will need to bring with us is the NG tube. Trust me that's enough and I'm a little nervous about it!

Last night was the best night yet-- alarms went off only from 3:22 am to 4:00 am. Sylvie didn't even wake up when they drew blood from her ports. I was so not used to sleeping for 5 hours that I felt drugged when I woke up to Denise the nurse standing beside me. Denise rocks. She has a 2 year old son (and older twins) and knows all of Sylvie's tricks. She flat out offered to donate a liver lobe to Sylvie (how couldn't you love someone who offers that?!) although she's not a blood match. Our other nurse, Susan, grew up in Ridgewood and went to Montessori Learning Center-- Mrs. Brophy was her teacher too! Small world.

Tomorrow, a nurse from Valley Hospital home health will show us the ropes. Since Sylvie has to be back at the hospital ready to go for Round 2 on Monday morning we do not need to give her shots at home. I'm awaiting some of the prescriptions (Tylenol #3, Bactrim, Compleat food and I'm sure there's more) to get a head start on that. We've been cleaning and disinfecting everything at home because we really need to create the most germ-free environment possible. No stuffy noses, sniffles or tummy aches allowed in 391 Wastena Terrace thru May! We have a box of face masks just in case although Slylvie is terrified of them. I thought for fun we could put some puffy stickers on them or draw animal faces to make them silly instead of scary. It's amazing what constitutes fun, right?

Besides the obvious challenges, it's hard spending so much time in the hospital because of the lack of privacy and ability to do selfish little personal things, like listen to music! I've been humming in my head the soundtrack to the movie "Serendipity" and a couple of Matthew Sweet songs that I love. My friend Mike told me there's a new Cake album this summer which is something for to look forward to.

It would really make my day if Sylvie would actually eat something today.

Once Sylvie's port needles have been removed, she can bathe, wear regular clothes and so forth. It's not that noticable unless Sylvie's shirtless. Then it might look like a misplaced breast implant since she's so teeny. That's the best way for me to describe it.

OK have to pack up a few things, fill the car with some stuff and run home.

3 Week Anniversary

We commemorated Sylvie's three weeks with cancer and hospital stay today with lots of princess movies, Dora the Explorer, coloring books and stickers galore. I have to day, today did not suck. Highlights include:
- Sylvie's in a great mood FINALLY
- Very positive meeting with all of Sylvie's doctors HOORAY
- Might get to go home for the weekend YIPPEE
- Visit from Dr. Rosen, Sylvie's pediatrician THE BEST
- Custom-made Princess scrubs that Ann had custom made AWESOME
- Heather's organic stuffed peppers FANTASTIC
- Chocolate from Mast Brothers in Brooklyn courtesy of Michelle (funny b/c of my comments about their facial hair last Wednesday. Dark chocolate, marcona almonds and fleur de sel-- AMAZING!

I think I spent the majority of yesterday sitting in the blue vinyl chair in Sylvie's room and waiting. For tests. For doctors. For x-rays. Just waiting. I do not like to wait but part of the new me is to be patient. I have it down pretty well except for driving. The one mile on Essex Street from Route 17 to the entrance of Hackensack University Medical Center, for example, is a real test for it contains the worst drivers imaginable whether they're driving beat up cars or luxury SUVs. I digress-- we had a good day and I'd love to talk about it!

Sylvie's team, led by Dr. Appel arrived early for rounds and had pretty good news. Sylvie's neutrophil count was about 600, up from zero on Sunday. There are 5 types of white blood cells. Neutrophils protect against bacterial infections. Chemotherapy reduces this number to zero which is why Sylvie can't be exposed to any bacteria, viruses or germs. You and me-- our count is probably around 1000. In order for Sylvie to continue chemo, she needs at least 750. Sylvie gets a shot of Neupogen daily except for chemo days to build the count. With her counts on the rise, they expect her fever to discontinue, the sores in her mouth to heal. The rash isn't getting any worse although they did discontinue one antibiotic. Sylvie's getting a really small dose of morphine around the clock just to make her feel a little better, too. And if Sylvie feels better, we ALL feel better! The most recent blood cultures came back negative, too. In order to go home, Sylvie needs to have no fever and be eating. We're working on the food thing. Technically round two of chemo starts this Friday but Dr. Appel and Ellen want Sylvie to be in good spirits, have a few days or R&R at home and higher blood counts. So we might actually get to spend the weekend at Casa Hughes and postpone Round Two until Monday. I cannot tell you how thrilled we would be to spend the weekend home as a family.

Sylvie was in one of the happiest and silliest moods that I've ever seen today. She was so animated and actually nice to the nurses. A welcome change.

I ran home to see Lucky, change my clothes, grab some food and try to upload photos of Sylvie and the family on Picasa. Once I figure it out, there will be a neat slide show on PrincessSylvie. I was looking at photographs and came upon a folder of recent photos that Sibel took of Sylvie blowing out candles on a birthday cake. Um... Sylvie's birthday is May 12. Apparently she suckers Sibel into pretending it's her birthday and it also explains the half-eaten birthday cake was in our fridge last month. Sylvie is so obsessed with birthday candles and cakes-- we have HUNDREDS of candles at home and Sylvie calls the King's super market in Midland Park, "The Candle Store." $0.99 buys happiness. Note to self though: Must cancel Sylvie's birthday party that we already booked.

While we were making sticker pictures and coloring Belle's and Aurora's as present for Dad, Michael had a rough day at work with a water tower "situation." Hence I'm spending the night at the hospital again. I told him that in the likelihood that I donate my liver to Sylvie, I may need a hip replacement thanks to sleeping on the couch/bed. And then a recovery period at a monestary that practices a code of silence. In the time it took for me to type this at least 10-- oops now it's 16-- alarms went off.