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!!!