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.