Au Contraire!!!

I just hung up the phone with Dr. Harris and Margaret O'Neill, our social worker at Tomorrows Children's Institute. I have to admit, when they called, I grabbed a pen and paper, sat down and braced myself for something horrible.

Dr. Harris said that yesterday's MRI did not confirm this is a tumor. It could be an organizing hematoma but it might be liver tissue continuing to heal. The increase in AFP is what they are concerned about but really, no tumor which means NO SURGERY!

I asked about his hope-meter and Dr. Harris said he is more hopeful today than he was on Tuesday.

We know that AFP goes up before disease shows up so we need to closely and frequently monitor Sylvie. Moving forward, she'll have a CBC and AFP blood test weekly for the foreseeable future. Monthly, she'll have an MRI of her liver and a CT-scan of her lungs.

He then went on to tell me about a to-be-published report on hepatoblastoma by Dr. Howard Katzenstein at Emory University who has been treating kids with recurrent hepatoblastoma with vincristine & irinotecan with positive results.

Therefore if Sylvie's AFP continues to rise significantly and we will don't see the tumor, she will most likely go on this maintenance (it's given via IV or orally). If the AFP drops, we won't do anything.

I would like also say that Dr. Howard Katzenstein is the son of my dad's best friend and fraternity brother from college. Very small world indeed.

I had to ask them, "Is this a good thing?" and they said YES!

AHMENNNNNNNNNNNNNNNNNNNNNNNN

Rain Rain Go Away

Crazy night. Intermittant power outtages from 7 until 11. Sylvie loves flashlights and was undeterred. I am going to tell her the TV doesn't work for as long as possible. I was outside with the 2 dogs, off leash at 11 when we lost power again.

In the meantime, my sister-in-law was in labor at Valley Hospital and according to the middle of the night emails from my brother, the back up generator was not working. As you might imagine, it affects the fetal heart rate monitor, pitocin pump, epidural pump, etc. So they made them move hospitals mid-labor! HUMC wouldn't accept a woman in labor so they ended up at Holy Name in Teaneck with a new doctor. As I emailed my brother this morning (before we lost power again), baby Dylan Jacob entered this world as a world-class adventure and traveler! In between appointments today, Michael and I are going to run over there. I cannot wait to meet the little guy.

I wanted to post Blood Donor center info in case anyone feels like parting with a pint or platelets:
30 Prospect Ave
Hackensack, New Jersey 07601
(201)-996-4819
Ask for Nadia

(they'll give you a free parking pass)

Yesterday's MRI went off without a hitch. My parents were there (my dad and his blood & platelets are very well-known there!) and Siobhan met us too. Sylvie didn't have a second to be psycho. I believe the purpose of the MRI is to give Dr. Valda and Dr. Harris a better picture of Sylvie's liver, NOT diagnosis. Today at 2 pm we have a meeting with Dr. Valda to discuss the procedure. We have lots of questions.

What is the procedure? Removing a large mass or just a biopsy?
What if it's benign?
What's the incision like this time?
How long will the procedure take?
Will he be operating on her alone or with Dr. Alexander?
NO MEDICAL STUDENTS, NO OFFENSE DOCTOR FRIENDS!
Hospitalization time? PICU or Pediatric Oncology?
Post-op recovery?
Is this life-threatening? Can they tell?

Last night, before bedtime, Sylvie asked me if we could have a "fashion show in the height of style." I made her repeat it to me twice just to be certain. I think that's a line from a Barbie book which we haven't read in over a month. Moments later, she got mad at me for spilling magnesium on her dress and declared, "I cannot wear my fancy necklaces with a dirty dress!" And like that, we went upstairs and put on a Princess nightgown, brushed teeth, talked about the good things, read Rabbit's Winter Walk and went to sleep.

We lost power again twice this morning. Sylvie and Sibel descended the stairs to the basement with Cinderella flashlights in hand and I followed them to turn on the lights in Sylvie's fairy tent. No sooner than I switched on the blinking lights, the power returned and Sylvie thought I made it happen. I like being the hero even for just a minute. Today we have lots of fun in store for Sylvie. Tracey's coming over for a play-date and this afternoon, Suzi Shelton and her daughter Emma are coming over with Two Little Red Hens cupcakes, guitar and princess costumes! Yippee!!! Sylvie is going to go bonkers.

Loss for Words

I'm at a loss for words this morning.

Sylvie is about to go to school/camp. It's 'camping week.' She can't eat anything because unbeknownst to her, she has an MRI with anesthesia this afternoon. I already lined up Siobhan from the Children's Hospital to meet us and help keep Sylvie a little less crazy.

Michael talked to Dr. Harris yesterday; I talked to Dr. Valda. Surgery is scheduled for Tuesday afternoon and we need to pre-admissions testing I suppose whenever they call me. I'm going to try and do it today or tomorrow morning.

I talked to Jette's mom yesterday. I didn't want to call her at work and start a sobfest. But since she called me first, then it was okay! We talked about how when Dr. Harris told each of us respectively that he would dance at our daughter's weddings. I told her that I was too scared to ask Dr. Harris the other day if he'd still be dancing at Sylvie's wedding.

That being said, Sylvie is so much healthier right this very second and prepared to stage a fight against whatever the fuck is in her body BETTER now than in February.

Other than that, we really know very little.

Detour

detour n. A roundabout way or course, especially a road used temporarily instead of a main route.

A DETOUR sign is never good. My own definition would add a line about a detour adding on incremental time to the journey.

They're repairing the sidewalks on N. Monroe Street and routing traffic through our quiet neighborhood. It's disconcerting seeing so many cars, like a funeral processional, slowly weaving through our streets.

Michael hates detours. He detests them, as if the orange signs are just for him. For the 15 months of so of driving to Dr. Rosen's old office in Old Tappan, we'd have to weave through detoured streets having no idea where we were going. We were ecstatic when he opened The Whole Child in nearby Oradell. And when the town had another detour on Monroe near Hillcrest, he gladly drove out of the way through Ho-Ho-Kus to avoid the orange sign.

We too experienced a detour of sorts today.

I had just returned to my desk from a meeting and was returing calls when my cell phone rang from an unknown New Jersey number. I always answer New Jersey calls because I am so scatterbrained. It might be someone I called for an estimate here and there. Or a friend. Or Tree removal. Reupholstery. Hello Kitty stickers on eBay. Or the hospital. It's always a surprise!

Today, it was Dr. Harris, Sylvie's oncologist who is also the head of pediatric oncology and hematology at HUMC. He was calling because he had the results of Sylvie's AFP level (Alpha-fetoprotein). Sylvie's last AFP was 17. Yesterday's test: 26.5. This is not good. This means there is presence of cancer still in Sylvie's body. (When Sylvie was first diagnosed, it was over 500,000.

Dr. Harris had already spoken to Dr. Valda who recommended doing an MRI with sedation immediately and scheduling another surgical procedure to remove the small mass from the remaining part of Sylvie's right liver lobe. I was sobbing in my crappy cubicle, trying not to draw attention. My friends Josh and Lorne sit adjacent to me and they are both parents to toddlers, too. He said after the MRI, we'd sit down like we did before. That was NOT a fun meeting and my mind drifted to the double-whammy shitstorm in the 'Family Lounge' with me and Michael hysterically sobbing into each other's shoulders. So naturally, I immediately asked if he was going to *surprise* Michael and me and say that Sylvie needed a liver transplant and he said NOT AT ALL. Dr. Harris said he was disappointed but "VERY HOPEFUL" and had a "TREMENDOUS AMOUNT OF HOPE." I asked if she needed more chemo. He said probably not, that the protocol for recurring hepatoblastoma is surgery. And technically this surgery would be less invasive than her previous one. (Dr. Rosen suggested this might not be 'recurring' afterall).

Michael talked to Dr. Harris who said he would have biopsied Sylvie's liver if her AFP level was 12 because he's not taking any chances. He saw it trending higher and was already tracking it. He said they need to see the MRI but right now, it seems very resectable. He said he talked to Dr. Valda three times today about it and is calling the Pediatric Oncology Cooperative tonight to hear what they have to say, too. He and Michael both commented on how healthy Sylvie is right this very second.

I went into my friend Beka's office because she's out on maternity leave and I could have privacy. From there I called Michael. Next stop was my my boss's office and proceeded to completely break down and sob. She's known me for all of 6 weeks so I was a little embarrassed. I can't quite wrap my head around work until I know more about Sylvie's condition. That being said, the executives at my company continue to be incredible and supportive; I just don't want to be a burden on them. In the immediate future (i.e. tomorrow), I'm putting all my ducks in a row, as they say, in case I have to be out again.

I know there is a catty undercurrent of gossip in my office from some of the 20-somethings who think us moms who 'work home on Fridays' are having double martini lunches and that it discriminates against them! Maybe they can walk in my shoes for a minute, try a flex schedule for a decrease in pay and balance conference calls with nap time and at least in my case, at least 3 trips a week to the hospital and another 3 to the different pharmacies not to mention the administering of medicine and so forth. Work/Life wasn't a walk in the park before Sylvie got sick, either. Sisters, unite I say, we've come a long way!!! They're lucky to work at an entertainment company with so many female executives! If they were at my former employer, they might be fetching Starbucks and calling in blind items to the New York Post for the next five years, wink wink.

Michael met me at the office and we caught the next train home. Sylvie and Sibel were walking up the driveway to go to Samantha's house. We were equally ecstatic to see each other and I couldn't help but cry. Sibel saw my tears and knew. I saw tears well up in her eyes too. I followed them over to Sammy's and told Sibel while we pushed Sylvie on a swing. I cruised home. Michael later stopped by Sammy's with flowers and stickers for the girls. They were very excited.

We are so overwrought with sadness, confusion and anger. Why can't Sylvie just get better and be like a normal 3-year-old?
We are so grateful to our friends and families for all of their help, love and support. No one wants to look cancer in the eye, let alone the eyelashless blue eyes of our bald-is-the-new-beautiful toddler but YOU DO. And you do it with love and affection and the occasional welling up of tears in your eyes. We are forever grateful to you. We will fight cancer once again. One cell at a time.

Fuck cancer. Fuck fuck fuck cancer. My kid has a hell of a lot of living to do so go the fuck away.

From now on, if it takes me an extra three minutes to get to my destination because of a traffic detour and I get to spend it with Sylvie while she sings in the backseat, that's okay by me.

So yes, our detour sucks more than your detour.

Champagne Wishes and Caviar Dreams

We were up at 5 am. Restless.
Dogs. Sylvie. Long day ahead of us.

I dropped off MIchael and Sylvie at the outpatient radiology registration where Sylvie had a meltdown, no surprise. I parked the car at the clinic and met them. I called Dr. Harris to let him know Sylvie had about 2 sips out of 8 requested ounces of berry-flavored barium. He didn't seem concerned.

Following the scans we went to the clinic for lab work, get a new port needle (ouch), see Dr. Harris, make Play-doh ice cream sundaes with Jette (can't Jette come with us everywhere? Sylvie is much better behaved around her). A busy day.

We waited around for the CT scan results and when it became apparent it would be later, we went home, lost in our silence despite Sylvie singing "Road Trip" in the back of the car.

And so we waited.

And waited.

All afternoon.

So we called. And were told to wait a little longer until clinic hours were over.

Dr. Harris called around 6. Lungs- O OKAY! Left liver lobe- LOOKS GREAT! Dr. Harris said, "Looks Stupendous!" Right liver lobe- WAIT I THOUGHT THERE WAS NO MORE LIVER LOBE??? Well, the scrappy remains of the right liver lobe look a little scrappy and this may or may not be a bad thing.

"I am not unhopeful, Mrs. Hughes" is exactly what he said to me which in my book translates to "I am hopeful"?

What it means is that he plans on talking to Dr. Valda and I asked him to talk to Dr.Dunn to see if this is what resected liver tissue looks like. It also means we have to wait an agonizing day or two to get the alphafetaprotein level blood test back. If it continues to be low- fantastic. If the number is higher, we need to investigate.

And that's all we know.

So, it's never easy and yes, we need a break. Why the fuck can't the Hughes family and our extended families and most important, Sylvie, get a break?

But if you were hoping to read tonight that we were opening the champagne, not quite yet. I never thought I could hold my breath for 48 hours but here goes.

This really could be totally fine. It's like when you bring your kid to the doctor because they have a bump or rash and it's nothing. Only in Sylvie's case, it might be something. Know what I mean? Naturally we're a little flustered, maybe even a little bummed because we thought our troubled times might be put to rest today. Hopefully they will tomorrow or the day after.

Sylvie is our idol. She's amazing. Funny, smart, precocious, fancy and fabulous. So in honor of Sylvie, we're going to be fancy and fabulous too until we hear back from Dr. Harris, although we will keep the champagne on ice.

No Sleep Till Brooklyn

Couldn't Sleep. Can't Sleep.

Today Sylvie has 3 CT scans of her chest, abdomen and pelvis. They'll check her alpha feta protein level. I guess you could say it is reckoning day in a way.

Michael has an overwhelming feeling of "How much more can the Hughes family take?" whereas all I want is for Sylvie to feel better and be "normal."

We had a great weekend highlighted by three things:
1. Sylvie is really trying to be mobile and despite not walking, you'd be amazed at all the other things she does. I mean, all our friends' kids do all of those things already. Baby Bella does them and she's not even 1 but you know what I mean. We've come a long way.

2. The Hughes family grew this weekend: We added an 8-month old golden retriever puppy who is already bigger than Lucky to the mix. Seeing Sylvie amongst about 25 golden retriever puppies was adorable and she's named our new friend either Lucy or Ruby, depending on the mood. I think we're sticking with Lucy although Little Bear would be the most appropriate name.

3. Family Dinner. We had Sunday Family Dinner last night with the Karas's and my parents. It felt like old times. Too many people squished at our smaller table since Samantha and Sylvie are old enough to sit with us (next time: the Dining Room!) and Baby Bella walking around and following OJ & Lucky. Observing Sylvie and Samantha's friendship brings tears to our eyes. Samantha is 14 months older and very intuitive. She is such a loyal, good friend. Sylvie wants to impress her constantly. And torture her about 1% of the time too. After we forced Sylvie to drink some Barium for today's CT scans and she puked them up, she asked if Samantha could sit in bed with her while we read "Fancy Nancy and the Posh Puppy," because Jewel, the Papillon, throws up, "just like me" as Sylvie excitedly points out. Samantha and Sylvie hugged in bed and Sam even offered her most favorite teddy bear. Sylvie didn't want to take it because it's Sam's favorite. Michael and I both got teary-eyed.

Suzi Shelton and her family were supposed to come out from Park Slope and join us but her daughter has a double ear infection so we rescheduled for next weekend. Sylvie will be beside herself and I think Sylvie and Samantha will be amazed by Emma's princess-ness.

OK Sylvie's awake; dogs need to go out and the day must begin.

Day and Night of Rest

Sylvie had an amazing day today! Two bowls of cereal and Physical therapy in the morning with Tracey and then Sammy & Bella came over for a couple of hours. We had to run over to Whole Foods and get string cheese. Sylvie devoured two. First hers and then Samantha's. Grandma came over for a visit, too! Sylvie was so confident that she spent hours crawling up and down the stairs, jumping, getting on and off the couch. I swear, walking would be easier. We had a visit from Sylvie's favorite clown at the hospital who teaches water aerobics at the Ridgewood Y and wanted to drop off a special present for Sylvie which was a clown-made lifesize Ariel balloon. Sylvie was beside herself. She was a bit puzzled that her favorite clown was not dressed up as one. I was trying to have a conference call with PBS but you could clearly hear Sylvie enthusiastically saying in the background, "MOMMY, LOOK! LET'S PLAY HOPSCOTCH!" over and over. Catherine picked up a bottle of barium from the hospital because she was nearby and thus saved me a trip. Somehow we need to get Sylvie to drink 8 ounces of. Sylvie finally collapsed on Michael around 4 pm.

I talked to Maeve, the director of Sylvie's preschool to discuss next year. We talk regularly about other things but I really should have brought it up sooner and was thrilled that Maeve has already taken the initiative to make sure Sylvie's in class with her friends and fellow neighbors. Sylvie and Miles were at camp yesterday together and Sibel told me that Miles walked up to Sylvie's table, sat down and they made rainbow fish together. Sylvie and Kate are going to be going next week-- it's Camping Week! I'm not sure what that entails. In addition and equally important, they are so helpful and willing to help out in case Sylvie's mobility is still an issue which I really hope not for Sylvie's sake and hours too. Lastly Maeve brought up a very good point which is "flu season" and although I was assured already that Sylvie will be just like any other kid next year, I really need to ask again. I was really so happy after talking with Maeve that I ran to tell Sibel the good news.

What could be better than a day spent with mom, Sibel, BFF Samantha, Tracey the physical therapist, Grandma, favorite clown, string cheese, cheesecake and trip to Learning Express to check out the Hello Kitty stuff!

Michael's on duty tonight as I head into the city to celebrate a friend's birthday at Macao Trading Company in Tribeca! Doing normal things like this is very good for my mental state. There is a Yankees game on tonight which will be very good for Michael's mental state, too.

We Will Rebuild Her

There's a reason why it's called C. diff, short for C difficile. 3 times in 40 days. 30 days of antibiotics in 40 days. She never had any antibiotics before this.

I've been so heart broken watching Sylvie wince in pain and tell me her tummy hurts because I erroneously keep telling her that every day she'll feel better and better which clearly isn't the case.

I took Sylvie to the Reuten outpatient clinic on Monday for labs and to see Dr. Harris. At this point, I want to know why Sylvie's stomach hurts and what we can do to fix it. Now. He rechecked her lab results from the prior week which came back suspiciously negative.

Some positive news here,side, Sylvie's counts are slowly coming back. So on Tuesday, Sylvie went to camp at her preschool and it was a fairy land adventure theme which as you can imagine, goes over very well with her. They stayed for 90 minutes, had a ball and came home because Sylvie's tummy hurt. Grrrr.

Yesterday, I went to the office while Michael took off and brought Sylvie to the clinic. Shortly after they arrived, Sylvie proceeded to poop all over Michael and herself upon which they were sequestered in a room until Sibel could come with new clothes for them both. Terry was Sylvie's nurse for the day and immediately said, I think it's C. diff. I left work early because Michael also had a 2 hour root canal procedure and was pretty out of it. It was my night to sit at the kitchen table and mix vials, set up the TPN for the night and hook up Sylvie's "backpack" while she entertained herself watching the Laurie Berkner movie and Michael slept.

When we talked about the good things before bedtime, she asked if we could go to the hair salon and get her hair back. On that note I brought her into my bathroom and gave her every single fancy barrette and clip I have, put them in a fancy blue box and gave them to Sylvie with the promise that when her hair grows back, she can wear them. She has carried them around ever since. Then again, she also carries around Hello Kitty stickers, a Cinderella flashlight, Hanna Montana lip glosses, Barbie nail polish and about 20 other things. She will be a big handbag girl just like her mom, grandma and great grandma!

So for the third time in 40 days, Sylvie has C. diff infection only this time instead of Vancomycin ($90 for a 10-day supply!!!), we're trying Flagyl. I have no idea how much it is. Michael left work early to run to Town & Country Compounding Pharmacy to pick it up. I guess if you need good news, Sylvie no longer needs Neupogen shots! Yippee! We are ALL very happy about that. The doctors think that once Sylvie's immune system bounces back C. diff will be history. In addition, both Dr. Rosen and the head of integrative pediatric oncology nutrition at Columbia, Elena Ladas, recommend a particular probiotic which I will get in the next day or so. Speaking of which, when I talked to Elena yesterday for the first time, she said to me, "We will rebuild Sylvie!" which sounded very Arnold Schwarzenegger to me but yes, we must rebuild Sylvie.

Sylvie has 3 CT scans on Monday and we then have a meeting with Dr. Harris.

Sylvie's Dream

They weren't kidding when they said Sylvie's counts would recover sluggishly after her sixth round of chemo. I took her to the Reuten clinic this morning where she was thrilled to see her favorite clowns and volunteers. The volunteers are all pretty young Orthodox girls and Sylvie adores them... Hadassah, Devorah, Stephanie... they are awesome. Annette is on vacation so we saw an Advance Practice Nurse who we had never met. Suzanne, one of Sylvie's favorite nurses in the clinic, was there too, fortunately. She had a brand new box of Hello Kitty band aids for Sylvie.

Sylvie's platelets were only 33, still critically low. Hemoglobin under 9. She's eating a little better but still not enough to be left to her own appetite. This means she needs more TPN at night and has to go back on Wednesday.

I did get a little angry when juggling phone calls with Tracey the physical therapist and Oxford only to learn the reason Sylvie has sat on her ass since being discharged from the hospital last Wednesday is because the hosptial forgot to fax in the 'continue PT' referral prescription. So when I asked our APN for the day if she could fax it in, she intimated that she was busy and could do it later. I told her that was totally unacceptable. I then asked the receiptionist at the clinic if she could do it an an Oncologist who I had never met overheard and said she'd talk to Dr. Harris and get it taken care of. Hallelujah.

Tracey came over at 3:30 but Sylvie was so tired that she wasn't as participatory. She's returning sometime on Friday.

You know you're a VIP at Town & Country pharmacy when you recognize the pharmacist's voice on the phone :-). Only a few more days of Neupogen! I had hoped yesterday would be it but she needs a few more days.

We took Lucky for a walk tonight and from the Bob Revolution jogging stroller, Sylvie said, "Last night I had a dream."
I asked her what it was about...I was pretty excited. She's never said that before! I imagined something hospital, princess, rainbow, Barbie-related. Au contraire.
"Soda. Grandma's soda. I only took a little sip." Then she proceeded to tell Michael and me how much she liked it, how it made her tummy feel better.
My mom swears it was only a teeny sip... that's what they say about crack, too. Michael and I had to hide how much we enjoyed Sylvie's toddler soliloquy.

Let's Talk About The Good Things

That's a picture of the beetle we saw in the street while walking Lucky and also stuck to our screen door.

"And it came to me then that every plan is a tiny prayer to father time" - Death Cab For Cutie

Isn't that the truth.

My friend Gabrielle told me that before bedtime, she and her kids talk about the best 'thing' of the day. It sounded like a great idea, so Sylvie and I adopted "The Good Things" where we recap the day. She LOVES it. I do too. It is VERY important to me that the last thing Sylvie and I talk about before she drifts off to sleep conjures up a happy memory. At least an hour before bedtime she pleads "let's talk about the good things" and I tell her we can only talk about them when we're going to sleep. Upstairs. Not on the couch. We lie face to face on her pillow, which used to be mine until she usurped it, and I begin recapping the day. It's always a 'good thing' when I am not in the city at work. There are usually references to Sylvie's favorite nurses, her physical therapist Tracey and stickers. Last night, Michael and I went to a party. My parents, fresh off the plane from a 2-week vacation, babysat. So we did not get to talk about the good things.

When Sylvie woke up in the middle of the night, she immediately asked if we could talk about the good things and I asked her to tell me a good thing in which she definitively replied, "Grandma's soda."

We're a very health conscious family and I've been reading lately about pediatric cancer post-chemo nutrition. The pediatric cardiologist had brought it up to Michael last month and Dr. Rosen also recommended we speak with an integrative pediatric oncology nutritionist. I joke that once Sylvie is eating normally again, there will be a new sheriff in town. In a nutshell, there are so many survivors of pediatric cancers that they are finding, no surprise, that nutrition is VERY important. There will not be any soda on Sylvie's good things list anymore! Sylvie also told me that Grandma doesn't know how to play the Laurie Berkner movie or use TiVo which we found pretty funny. As I've mentioned before, Grandma and Sylvie share in their love of shopping. I was hesitant when my mom walked in with a 2 Ecco shoe boxes because I've been trying unsuccessfully to get Sylvie to wear any other shoes besides her white sandals and didn't want my mom to face the wrath of Sylvie. But instead, Sylvie opened the box and was totally mesmerized and instantly in love with her fall shoe collection. It was pretty cute and a welcomed surprise.

On that note, Sylvie is starting to eat a little again. Yesterday she ate a few bites of an egg wrap, one strawberry and one Boca Burger fake-chicken nugget. It's a start. Today she ate about 2 nuggets, 1 strawberry, a few bites of cheesecake, a spoonful of Annie's 'Arthur pasta,' a bite of turkey and some salmon. I have high hopes for tomorrow.

Today we were supposed to go to a picnic but Sylvie fell fast asleep so we just drove into the city. I ran into Commodities while Michael sat in the car reading The New York Times with Sylvie sleeping in the back. There's a wonderful op-ed that you probably missed entitled "It Takes a School Not Missiles" about Greg Mortensen who wrote "Three Cups of Tea" and more importantly continues to build schools [for girls] in Pakistan and Afghanistan. Sylvie's 2-year birthday party was a Pennies for Peace party and in lieu of gifts we asked friends to bring pennies. We ended up donating over $200 from the coins. This year's not-for-profit is of course, the Tomorrows Children's Fund.

After Sylvie woke up, we zoomed around the East Village. The only good thing about Sylvie not walking is that for the first time, she's content in a stroller. Sylvie was hell bent on finding Hello Kitty stuff but "settled" on a bag full of carefully chosen marbles from Dinosaur Hill and then even more from Sons & Daughters. We stopped for Cupcakes at Butter Lane which were pretty divine. You can actually see the vanilla bean in the frosting. Then we headed home with a brief stop at the community garden. Michael ran ahead and planted stickers strategically in our garden and the adjacent one. We tell Sylvie that the garden fairy leaves her special presents, hence she is very happy to go with us and sit on a tarp while we pick lettuce, chard and tomatoes. She soon forgot about Hello Kitty.

Tonight may very well be Sylvie's final Neupogen shot ever!!!! You cannot possibly imagine how happy that makes all of us. It was terrifying learning how to give Sylvie an injection and the daily fight with her has been awful. That being said, it took 5 months for Michael and I to realize that the best way to do it is to wake her up right before we go to bed. She doesn't even remember it. It is a little hard maneuvering the syringe in the dark, however.

Sylvie has to go for lab work tomorrow but after last week's marathon of platelet and blood transfusions, I'm not expecting anything like that.

When we're bored at night we search endlessly for vacation ideas having no idea when we'll be able to travel but dreaming about it none the less.

Hallelujah

Hallelujah
Hallelujah
Hallelujah
Hallelujah

Your faith was strong but you needed proof...

Today was Sylvie's final dose of Vincristine and thus ends 5 months of darkness for the Hughes family. When I held Sylvie's tiny hands in mine this afternoon and said that tomorrow and every single day after that she would feel better and better, I am speaking the truth.

Clearly, we have grown closer as a family, closer to our friends and closer to our community. But I'll never forget 2009 as being the worst year of my life, in truthfulness. Or better yet, I hope 2009 goes down in my little history as the worst year of my life. So for Michael and me, each day should get better and better for us, too.

The hospital was alive with fun and games-- you couldn't have timed Action Figure Day and Sylvie's final day any better. Her favorite clowns were there applying temporary tattoos onto Sibel and me while Sylvie simply collected hers for future use. Then someone came around with a book binding thing that printed out a hard cover Aladdin book for Sylvie customized with her and her friends names. Siobhan and I worked on Sylvie's hospital scrapbook and after arming Dr. Valda with Barbie Band-Aids for the first time in 5 months, Sylvie didn't kick him out of the room.

A physical therapist dropped in and Sylvie was completely intolerant of her. Sylvie screamed her right out the door.

Today wasn't without delays as Sylvie's 2 pm ETD was more like 6:30. Damn pharmacy but good thing mom followed up on Annette's comment regarding Sylvie's monthly pentamidine or we might still be there. Danielle was Sylvie's nurse for all three days although Jessica kept coming in for her hugs, kisses and I even heard an exchange of "I Love You," too. Danielle is very fastidious. I know that any delays from the pharmacy or blood bank drives her nuts. I was driven nuts that the lab had taken over 24 hours to process the latest test for c diff so I asked Danielle as a parting gift, to retest Sylvie.

Margaret, our social worker, called me early this morning as I was driving to the hospital so I could vent my concerns and frustration. I gave her an itemized list and she's helping us along. Annette came up this morning from the clinic so we could review the next few weeks. We'll have our Team Sylvie meeting on 7/27 when both Annette and Dr. Harris are back from their vacations. Fuck vacations (sorry). We'll do Sylvie's CT scans that day too. If all goes well, Sylvie's port will be removed as soon as we can schedule it with Dr. Valda. Outpatient. Great. Ellen came in with the doctors and I had run out of things to say and ask. Greg who is a social worker and works with Margaret stopped in to drop off literature on Camp Sunshine in Casco, Maine. They have family camp for oncology patients in late August which families rave about. The TCI-run camp is for kids 4 and up so Sylvie isn't eligible for that one.

TPN until Sylvie starts eating. No idea when she'll start walking. Fortaz antibiotic at home which means Michael and I have to set the alarm for 4 am to administer and inspect our work to make sure we do it right in our sleepless haze. Continued Neupogen shots until next week and then NO MORE EVER!!!!! I cannot wait to return the red plastic syringe bin back to The Whole Child!!!! Magnesium continues for a while-- crap-- we left it at the hospital and it takes 24 hours to compound. I give up. Not the end of the world.

Princess Sylvie followers, I don't care if you're religious or not but do me a favor and say with me AMEN.

Transatlantacism

What can I say besides we're a little bummed. I brought Sylvie to the Reuten clinic Monday morning. Sylvie's platelets were 6 which is critically low, she had zero white blood cells, and a 101.3 fever. Instant admission. Damn Sam. Suzanne called upstairs and to admitting as soon as Sylvie registered a fever. Any fever over 101 is a minimum 24-hour sentencing upstairs.

WE'RE SO CLOSE TO BEING DONE AND HOSPITAL FREE!!!!!!!!!!!!

This sucks. On the other hand, Sylvie was psyched to see "the gray man" and go really really fast in the wheel chair through the Mark Messier sky wing and up to good old Room 4 in Pediatric Oncology & Hematology. Once again, we can learn a lot from children. And so we settled into a few days at the Four Seasons Hackensack.

Michael slept over last night so that I could go to work today. Dr. Rosen came by to hang out with Michael; I think Sylvie officially thinks he's our good friend (which he is) instead of a doctor. She eyed his doctor badge suspiciously, Michael said.

I'm fried. Exhausted. Toast. Whatever you call it.

In case I give the impression that going back to work part-time and juggling Sylvie's appointments is manageable, let me say for the record that I can only compare it to training for a marathon when your broken ankle hasn't fully healed. It's like closing an infected wound. On that note, I have a stress fracture in my left femur so no running for me for 8 weeks. Just when I was getting into the groove and a new iPod. Happens to me every time. X-rays of my femurs would show years of callouses from healed stress fractures. Each one is caused by the fact that I get really into running whenever I'm going through some personal hell and overdue it [compounded with my spine being fused].

I am happy being back at work but it's very hard to balance Sylvie's appointments with conference calls and deadlines. It's not like I'm at the beach when I'm not in the office. Granted, I would LOVE to be at the beach. Instead I'm sitting in a chair alongside Sylvie's bed usually somewhere with no cell reception. I have two very time sensitive project at work; otherwise I might have postponed my returning. I nearly cried last night when my mom asked me how I was doing.

Today was a double whammy on the train. There's so much construction at the Ridgewood train station that the NJ Transit ticket-takers do not charge the $5 surcharge for paying cash for a ticket on the train because you are very likely to miss the train if you have to run to one end to purchase a ticket and back to the other side to board the train (because a very high and menacing fence blocks off 80% of the sidewalk). The train attendant, a woman who sometimes goes beserk on the loud speaker yelling to everyone to remove their personal belongings from the seats to allow others to sit down. Anyway, she went to charge me the $5 surcharge and I had to reason with her that, DUH, they have waived it during construction which trust me, she was well aware of. Finally she relented and I gave her my $6.50. I wanted to say to her, "No Carmel Macchiato with Whipped Cream for you today" but instead read an old New York Magazine and kept to myself. Somehow I missed Catherine who was also on the train.

You don't need to hear about work besides the mad dash of meetings and more meetings and my making a list of everything I want to review with Sylvie's doctors and APNs tomorrow. I called our social worker, Margaret, to see if she could attend the meeting as well. Then Michael called me to say Dr. Harris is on vacation this week which kind of sent me over the edge because I've been asking to have THIS meeting TOMORROW for TWO WEEKS and if he was going to be on vacation, I would have appreciated knowing it. I'm still a little surprised at how non-chalant everyone's been about my wanting to simply get in a room and get on the same page and talk about the next month, six months, year. For example, what are their post-cancer recommendations for Sylvie's well being? What constitutes an emergency and where do I go/call (The ER, The Clinic, Dr. Rosen?) Is Sylvie more susceptible to getting some ghastly virus? Do any of her chemo drugs increase the likelihood of other pediatric or adult cancers (I know the answer is YES already)? Are there any red flags in Sylvie's test results or response to treatments over the last 5 months that would increase the likelihood of her cancer returning? And little things like can we travel and WHY DIDN'T ANYONE TELL ME THERE IS A TCF CAMP FOR THE KIDS IN AUGUST BECAUSE WE'RE ALL GOING STIR CRAZY AND IT WOULD BE GREAT FOR MY KID TO HANG OUT WITH KIDS FOR ONCE IN 6 MONTHS.

It's been a long year. I'm tired. I need to sleep for like a month.

Fast forward. I sped out of work to make an early train to Essex Street. I bolted through the PATH station, saw I had 1 minute to make the next Spring Valley train. As I speed walked alongside the soon-to-depart train, I asked the train conductor guy if the train stopped at Essex Street, just to be sure. A resounding, "YES!" I hopped on. Fast forward, I was talking to my college roommate Jodi on the cell phone as the SAME conductor guy came buy collecting tickets. I handed him my one-way to Essex Street, Hackensack and he looked at me, smirked and said, "This train isn't going to Essex Street. Next stop is Pearl River. New York."

I dropped a few f-bombs. I started crying. And then my 4 hours a week of yoga and zen self flew out the window as I cry-screamed at him, "YOU told ME the train stopped at Essex Street when we boarded the train TOGETHER. My daughter is in the hospital with fucking CANCER and now I won't see her before she goes to fucking sleep. How the fuck am I going to get from Pearl River to the hospital?!" He said he made an announcement which I didn't hear but foremost, we boarded the train together, I had asked him and he LIED. Fuckwad. Sorry guys, it takes all the power within me to not curse like a sailor and today, I am powerless.

I sobbed into Michael's voice mail. He called Andy who hopped in the car to meet me in Pearl River. Andy called me and said his wife (Catherine) and I share the record for most "wrong trains." I contended this was totally not my fault!

To make a long story longer (remember, they're called Audra Stories), I got to the hospital at 7:30 and Sylvie was fast asleep. Had I taken my normal train, I would have gotten there at around 7 pm. So my efforts at getting there early today-- by 6 pm-- failed. All I can hope for is that tomorrow will go better and that the train conductor guy felt like shit for the rest of the day. A very kind woman followed me off the train and offered to have her husband drive me to Hackensack. The dude got such dirty looks from the other passengers that he didn't even re-enter our car after collecting all the train tickets. F&*^^# JERK. I have until Yom Kippur to hold a grudge against him although my yogi wisdom is telling me to let it go right this very second. We'll see how I feel tomorrow.

OK Michael's mom is staying over the hospital tonight and I'm looking forward to hanging out with Michael, reading Vermont Monthly magazine and dreaming about our house. Hence the photograph of Lucky wading in the Lamoille River off of the Quiet Path in Stowe.

Afterall, tomorrow is another day.

Nourish The Inner Aspect

You would think that after 5 months of very aggressive chemotherapy and "all that it has to offer," we would be accustomed to Sylvie throwing up. Not the case. So tonight, I tried to give Sylvie her last dose of the 10-day supply of tooty-fruity-flavored Vancomycin and she looked a little off. Then I noticed the hiccuping. Then she said, "I can't open my mouth!" Then I said, "Michael, get a bowl!" And he was too late. Sylvie was most upset about getting her butterfly dress dirty. I contemplated giving her Zofran (anti-nausea medicine) but the likelihood of Sylvie opening her mouth to ingest anything for the rest of the night was slim and none.

Sylvie's TPN pump malfunctioned around 3 am last night which had all of us up for nearly an hour. I fell back asleep in Sylvie's bed and she woke me up at 5:40 am and demanded to go downstairs. Michael "slept in" while I played with Sylvie. My consolation prize was prize was going to yoga at 8:30. We spent the rest of the day trying to avoid having to bring Sylvie anywhere public since she's neutropenic. We did attempt meeting my brother & niece at the Duck Pond but after two licks of a Dora ice pop, Sylvie was finito. Granny Annie came over to spend time with Sylvie so Michael and I snuck out for a run. We were running down Crest and right in front of our faces, a magnificent white and gray hawk hovered less than three feat away dangling a bloodied dead chipmunk. It was an awesome powerful sight. So while dear Pablo's friends and family on the West Coast have been seeing doves and butterflies, we are being tailed by hawks.

Since we don't see the delivery guy from Home Solutions, the medical supply company, nearly enough, he came by with a new pump. It's the third time they've come this week. Linda, the nutritionist who I've written about many times before, told us that plants love TPN so hopefully our garden will be even more fruitful with the leftover custom blend of minerals, glucose and lipids.

I've been wanting to bake something for our new neighbors who recently moved from Park Slope (SCORE: Park Slope- ZERO, Ridgewood-FOUR!). They have a princess-loving daughter Sylvie's age, too. In a neighborhood filled with over 14 little boys under the age of 6, we need a little more girl power. In addition, I'd rather be known for my mad skillz in the kitchen than the unspoken new neighbor with sick child.

Since Michael and I get to spend so much time at night together, he's becoming a fan of my favorite gossip, online sample sale websites, the Real Wives of New Jersey and Organic Gardening magazine (real men garden :-). That being said, I was following a recipe for Tate's chocolate chip cookies from Goop which became fodder for this evening. Goop is Gwenyth Paltrow's pretentious zen lifestyle website whose moniker is "Nourish The Inner Aspect" (what exactly does that mean?). It got trashed in The New York Times in February which she later defended to The Huffington Post that she launched the site "because I felt like I had a lot of really useful information that I was privileged enough to get, because I have this amazing, super, fortunate life." I mean, at least she's not lying.

So getting back to the cookies. I love Tate's Cookies. I could eat the whole bag. Whenever I'm in Whole Foods, I fondle the bag, look at the $5.49 price, imagine myself eating the entire bag on the way home, replace the bag and leave. So when my friend Cindy told me the recipe was on Goop, I was pretty excited. So while I was making cookies, Michael was busy studying Goop, alternating laughing out loud and then saying that Gwenyth likes all the same restaurants in New York City as us fro the fancy to the neighborhoody to the vegan and what does that say about us? I told Michael to nourish his inner aspect. Michael then laughed at her recommendation of taking kids to River Cafe in London where Michael said he had one of the most expensive meals of his entire life. Paraphrasing Michael's guffaws... "Gwenyth says 'They're so nice to kids at River Cafe'. Michael retorts, 'They're so nice to GWENYTH PALTROW and CHRIS MARTIN'S KIDS at the River Cafe!' Our new neighbors are British so I hope they understand the humor in cookies whose recipe I procured indirectly from fake-Briton Gwenyth Paltrow. And that they forget, even for a moment, that we're the family a few houses away with the sick kid.

To conclude, I totally made fun of my BFF Polina for liking Goop back in February but I totally concede. I am guilty. And the chocolate chip cookies are the best "grown up" chocolate chip cookies ever.

Hopefully Sylvie will start eating tomorrow. If all goes well, we're going to Ft. Greene to Sydney's first birthday party in the park. I always call him Seymour :-).

Five Days To Go

My Blackberry is on the fritz. I drop it once a week. I had to glue a piece back on the keyboard with Sylvie's glue stick from school. Michael keeps flaunting his iPhone to me and I love my beat up Blackberry. I need to back it up but it's such a pain with a Mac. I need to just do it. I need to just do a lot of things though!

Anyway, just in case it stops functioning, I have been trying to copy some of my Memo files. I'm an obsessive list maker... Pet names, baby names, presents, holidays, cholesterol levels, band names, books read, mix tapes, you name it, I have a list for it. I even have a hospital list that I jotted down one day, probably while driving. I was going to erase it because on one hand, I know what to bring. On the other hand, we're five days away from Cancer Be Gone! Is erasing it good or bad luck? I'm undecided. So I thought the safest place for the list is right here:

Diapers
Window stickers
Baby
Coloring, sticker, color wonder books
Plain paper and glitter pens (just a few)
Pink blanket and ariel pillow
Nightgown
"Melissa and doug" magnetic dress up, laces, birthday cake counting game
A few books to read
Playdoh
movies

Fridge:
Lemon juice
Tortillas
Tea
Turkey
2 bowls, forks, spoons,etc.

Running shoes
Yoga mat

I took Sylvie to the Reuten clinic today for labs and possible platelet transfusion. Sylvie was happy to see the nurse Terry but was pretty irritable otherwise. She still hasn't eaten in 8 days. The TPN gives her calories and electrolytes so Sylvie is holding steady at 22.3 lbs. Linda says the second Sylvie's appetite light goes back on, we'll stop the TPN because once it's back, it's back "forever." I'm not used to that! I'm used to her not eating every 7 out of 21 days. I love hearing Sylvie's medical team talk about no more chemo. It makes it more real to me. Michael joined us at the hospital later and Annette came in to go over Slvie's labs. Sylvie's ANC is 30 which is basically ZERO which means she should really stay home for the next few days or do things outdoors. In otherwords, no stores, malls, parties, classes, etc. Sylvie's platelets were 22 which is critically low however two days ago, they were 7. At 7, you'd expect bleeding gums, bloody nose and so forth (as we have experienced before) but she's really been pretty good. Hopefully she will not get a fever this weekend. In as much as I adore the nurses of 5E Pediatric Oncology, it's perfectly okay to not see them.

Michael and I are watching the Death Cab For Cutie concert on PBS Soundstage. It's pretty awesome. I can't remember any of their songs by name but I really enjoy the music. There's a song about the creation of the ocean which we're debating right now. I saw it's a love song about a marine biologist. Michael says it's just about the ocean and sounds like a song by The Cure. The cameras keep going back to the three hot chicks in the front. I don't know how the guitarist wears a long sleeve button down shirt and a wool sweater on stage. Now we're watching the Yankees/Angels game and I swear I just heard The White Stripes "Conquest" being played in the stadium. I like the song a lot mostly because the video featuring Jack White as a matador is so incredible.

I'm finally reading a book about coping with cancer that was a present from Temple Beth Tikvah. I'm only in the beginning but it's pretty interesting. It opens with a line from Dante's inferno about how good it is to look back. Looking back on the past six months pretty much SUCKS although we've definitely been able to extract some very positive messages from all this.

Sylvie's an angel from 8-9 pm. Bedtime used to be a disaster and now it's the best time of the day. We talk about "the good things" and then sing "Sloop John B" several times. We even have gestures and dance moves that go along with the song. Michael is amazed by our Sloop maneuvers and cringes when Sylvie sings, The first mate, he got drunk, broke into the captain's trunk. I put the Beach Boys version from Pet Sounds on my iPod and Sylvie sang it all the way to the hospital.

Next week, Sylvie has to go to the clinic Monday morning for labs (and definitely platelets) and Wednesday for her FINAL chemo! We're going to bring treats and have a party. I asked Annette if she and Dr. Harris could have a sit down with Michael and me. She seemed a little surprised acutally. I need to know what the next month and year is going to be like.

Independence Day

Having a professional photographer as a brother is a good thing :-). We had a blast on July 4th. Many thanks to Scott Noonan and the Fair Lawn Fire Department who offered us a ride in their fire trucks and displayed Tomorrows Children's Fund and Strides For Sylvie banners during the big parade. Scott came over to the house the night before and showed Sylvie a picture of what he would look like in his uniform which he'd be wearing during the parade. Sylvie was so excited to see Scott whenever he came by the fire truck to see how we were doing.

Miss Sylvie sat on my lap for 2.5 hours during the parade! Only once did we have to show her Max and Ruby on Michael's iPhone. And only one fit when she saw the ice cream truck. "I want a Dora ice pop NOWWWWWWWW!" could be heard for a city block. It wouldn't be a Village of Ridgewood event without a bunch of guys selling crap on wheelie carts. During the holidays, it was light sabers. And this past weekend, it was inflatables. Hello Kitty, Spongebog, Dora. And plush dogs on leashes. I promised Sylvie after the parade we could get ice pops and blow up Helly Kitty's. When we disembarked the fire truck, Sylvie yelled out, "That was fun!!!" After the parade, we strolled back through town and there Sylvie got a lesson in retail: Stores are closed on July 4th. She proceeded to ask me all day long why. This confirmed she is very closely related to my mom.

Free Cupcakes!

I'm a cupcake snob. Sylvie is too. There is no comparing a New Jersey cupcake to Magnolia Bakery, Cupcake Cafe, Buttercup Bakery, Billy's Bakery, Two Little Red Hens or Ciao For Now. But I try. I try them all. And when 201 Magazine listed several bakeries as sure hits, I tried a few and they too were sure misses. They just aren't the same. So when my mom gave me an article from The Record about a cupcake shop opening on Ridgewood Avenue, I was very anxious to check it out. Today was the second day that Cupcakes by Carousel was open for business so I loaded up on a box for me and a box for my friend Jen. She "warned" me about the decor. I told her that unless it had painted-white wainscoting, pastel paint, Schoolhouse Electric light fixtures and lots of brushed chrome that I will not like it. I told her that in my mind, it should look a little like the Bridgehampton Candy Kitchen but cleaner. I accidentally first walked into Dolce where they had a cheap "cupcakes... cupcakes" sign in the window and their cupcakes looked disgusting. We backed out and went to the OTHER side of the movie theater. I love the logo and the free magnets and temporary tattoos. Otherwise, it looked like Ben and Jerry's which disappointed me a little. But that's just me.

I was a little surprised and irritated to also see that a Crumb's bakery is opening up the block. How many cupcake shops can Ridgewood Avenue support? A locally-owned business and a franchise? I bought Kosher-for-Passover cupcakes at the Crumbs near my office once and they were horrible. Michael likes them because Artie Lange has a cupcake named after him.

That being said, Jen called me to say that the cupcakes tasted pretty darn good and Michael & have to agree! So thumbs up to Cupcakes By Carousel! They're giving away free cupcakes this weekend, too!

192 East Ridgewood Avenue (next to the movie theater) 201-389-3090

Urine Trouble

Stories about urination and pooping are one of the many dinner table conversation topics that separate parents from those who do not have kids. Eight years ago, I attended my first "cookie party" at a friend's house in Montclair, me being the only single without child person in attendance. A former coworker of mine who was also there made a comment that she had recently joined a book club because she needed to be able to talk about something other than diarrhea. It meant nothing to me at the time and now that I have a daughter, I swear, I still like to talk about things other than Sylvie's bodily functions. That being said, I wasn't sure whether to disclose Michael's embarassing moment from the other day and mine from this afternoon. What the heck. It's kind of funny.

When we got home from the hospital early Wednesday evening, Sylvie was alternating her demands to go "someplace special" and her immediate need to eat salmon. So Michael and Sylvie quickly departed to Whole Foods to pick up dinner. Sylvie proudly picked out a piece of Norwegian Salmon while Michael held her close to the glass case to get a closer look. Sylvie proceeded to pee, perhaps in excitement, however she not only soaked Michael but also some of the metro shelving in front of the fish case. Michael looked at the fishmonger HORRIFIED, holding our near-bald daughter in his arms, then apologized and explained she just had chemo. The fish guy looked back apologetically and said, "Man, you have problems far greater than my having to throw all this out! Don't worry!" And with that, Michael and Sylvie left and the fish monger threw out nearly all the bottles, jars, packages of stuff lining the front of the glass case. Michael assured me that it's perfectly safe to shop there and that everything was thrown out.

Today, Sylvie and I were heading into town to check out the new store, Cupcakes by Carousel, and made a pitstop at Learning Express. We were analyzing Hello Kitty lip glosses and stationary kits when Sylvie said, "Mommy my tummy hurts. I have to fart." It sounded like a balloon deflating. it went on for what seemed like forever. I was too scared to move. I called Michael and told him he had to meet us outside with a diaper and wipes ASAP. We quickly paid for our Hello Kitty jewelry and Barbie stickers and ran out the door. For future reference, the store has diapers and a bathroom in case you have an emergency. Michael was right outside when we departed and Sylvie was as good as new in no time.

Our friend Scott came by this evening to pick up the Tomorrows Children's Fund and Strides For Sylvie banners for the parade tomorrow. I hope she has fun in the fire truck. Just in case, I think we should bring the backpack in case one of us needs to carry her home. Sylvie has been pretty ornery all day except when we were listening to the Dan Zanes concert in the car and ran into my friend Jen. She loves Jen and was happy to tell her about The Littlest Petshop. Otherwise, the effects of chemo are hitting her hard. It was time to take out the heavy artillery before bed-- Tylenol With Codeine. Essentially it takes 2 weeks for the chemo to make her hit rock bottom. The doctors and nurses have advised us to be on the look out for petechiae, pinpoint-sized red dots under the surface of the skin, indicative of low platelets. Whenever they mention it, I think of "petechial hemmoraging" which is mentioned in nearly every single episode of CSI.

Sloop John B

OJ stealing ice cream while we watch the Iron Maiden tour documentary, "Flight 666."

Sylvie is fast asleep in the middle of our bed safely positioned on two mattress pads with the TPN backpack, a new My Little Pony activity book, Princess 'ring' lip glosses and butterfly stickers beside her. Sylvie doesn't travel light. Before sleep, I read to her a 'potty' book and a folk music book that my brother gave her signed by the author whose name I cannot remember. Sylvie loves the song/story about the fox which to me is gruesome and then another equally gruesome one about a man bit on the heel by a snake. I haven't played the accompanying CD which I should probably do because I make up the tunes as I go along. The only song I know in the book is "Sloop John B" and I have to admit, despite working in the music business my entire life, I thought it was written by The Beach Boys from their "Pet Sounds" album. It wasn't until this book that it dawned on me there might be something more to it. Fast forward to 2 weeks ago when we went to see Dan Zanes play maritime songs at the Muesum of Natural History and he too performed "Sloop John B." And in a meeting today in which we were reviewing tracks on an upcoming soundtrack that I'm working on, sure enough was the first song listed. SO, in case you are wondering, the song is a traditional West Indies tune about a sunken boat made popular by The Kingston Trio who adapted it from a version in poet Carl Sandburg's 1927 songbook The American Songbag. Dan Zanes released an album celebrating sea music on which it also appeared. My favorite song on that album is "Strike The Bell."

We sailed on the sloop John B
So hoist up the John B's sail
See how the mainsail sets
Send for the Captain ashore
I want to go home, O let me go home
Please let me go home
I feel so broke up - I want to go home


We are almost home indeed. We've had a "VIP"parking pass that has allowed us to park for free at the hospital all these months. Truth be told, we had a second but we lost it some time ago. As you can imagine, after over 100 daily trips to the hospital and presenting the pass to the parking attendants over and over and over again, it's tattered. At this point, one of the women who works there actually exits the little booth to say hello to us and let us know if my parents have been by. She always asks about Sylvie and sends us on our way with a "God Bless." The other mostly guys who work there are pretty stoic. They read the New York Daily News or the NY Post and grab our pass as if they have never seen us before. When we were leaving the hospital yesterday, a new woman was working the parking booth. She saw our shredded pass, looked over at Michael and asked how "the patient" is doing. Obviously the only people who have this special pass are there for very unspecial reasons. But we were leaving because technically it could be Sylvie's last time as an inpatient!

Once again, Michael took off work today so that I could go to work. He and Sylvie had a great day, the highlight being a ride on the carousel at the mall. Sylvie told me that she was scared at first, had fun and wants to go tomorrow. This is a big deal for her.

The Final Countdown

Remember this? I can't wait for pigtails, swings, messy ice cream cones, dirty playgrounds or just playing in the dirt by the duckpond.

Sylvie's three in-patient days at the hospital came and went uneventfully with the exception that every night as Michael and I switched off sleeping in the hospital with Sylvie, we said it was the last "Day One," the last "Day Two," and the last "Day Three" of chemotherapy and soon we will be a reunited family. At home.

Sylvie was so ecstatic to see her nurse friends in the clinic, play with Jette & her sister Nevada, ride in the wheel chair sitting on my lap as we cruised through the Mark Messier Sky Wing and up to the Fifth Floor that on one hand I was thrilled to see her so hapy and on the other hand her Stockholm Syndrome made me a little uneasy. But that's the difference between kids and adults. Whereas we are sick and tired of the hospital routine, Sylvie has grown to love her new friends and surroundings at HUMC. We're happy that she's happy of course.

We got situated in Room 26 with a view of the Manhattan skyline and nurse after nurse came running in to say greet Sylvie who was equally thrilled to see them.

I'm pretty relieved that the nurses and doctors refer to this as Sylvie's last round, last time in and so forth. I mean, I fully expect her to wind up back in the hospital between now and July 15 based on previous experience but I've been wrong before. She's spent around 100 days in the hospital since February. No one should have to experience that.

Sylvie's AFP level was 20 which is higher than last time (13) and alarmed us because it's a cancer marker. Her level started at over 500,000 so the doctors assure us that 20 is totally fine. I guess we just have to take their word because they are oncologists and we are just parents.

I finally brought out the pink doctor kit that my cousin Rhonda gave Sylvie and she LOVES it. It only took 4 months for her to enjoy 'medical play' toys and of course Sylvie has added her own bandages, syringes (no needles of course!), cleaning swabs to further authenticate it.

Today was a little frantic because Sylvie had to get a blood transfusion in addition to chemo, we had to make two trips to the compounding pharmacy and get a delivery of a 5-day supply of TPN at home. And she's c-Diff positive again which explains her stomach pains and diarrhea. It also means 10 days of Vancomycin and a lot of hand washing. Linda, the nutritionist said Sylvie will feel better very soon and eat a lot more. I told her that Sylvie ate 1/3 lb of salmon for dinner last Saturday night and her weight remains a stable 10.5kg.so I did not notice anything unusual about her eating habits. Linda said that if you or I had c-Diff, we would be in so much pain that we wouldn't eat a thing. Sylvie is stronger than all of us but we already know that.

Supposedly Sylvie will have surgery to remove her port following the post-chemo CTscans. That will be a very exciting day for all of us.

On the work front, it's been very hard these past three weeks juggling work and Sylvie. When I work on Thursdays, Michael has to stay home. if the TPN delivery is late and we can't start it until after 7:30, Michael has to go to work late or not at all. I was supposed to be in the office today and there was no physical way to make it happen. We go to extremes to make it look like we have our proverbial shit together but really, it's together with a very fine thread! At least this week.

This weekend, Sylvie is going to be riding in a Fair Lawn fire engine or fire chief vehicle in the Ridgewood July Fourth parade. I hope Sylvie has fun and that it isn't too noisy. I told Sylvie that millions of little boys would LOVE to ride on a fire engine! We shall see!

When Sylvie goes to sleep, we close the evening by talking about the good things that happened during the day. (Thank you Gabrielle for the idea!!!). Sylvie loves this ritual. I do too. So when we went upstairs tonight and while Michael was hooking up the TPN IV "backpack" and Sylvie & I were exchanging good things, I told her that every single day from this point forward, she is going to feel BETTER. Us too.