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.