AFP 8.9!!!!

Princess Sylvie last night.
AFP= 8.9!!!!!
And, as Michael and Dr. Harris are quick to point out, the Yankees are in the World Series!
I’m hyper-organized and over concerned about being fastidious which I guess you could call obsessive compulsive and yet I’m not entirely successful because since Sylvie’s diagnosis last February, I have been particularly consistent in screwing up personal appointments and engagements. So when I send Sylvie off to play dates on the wrong date or time, I’m personally embarrassed and crushed, especially since I’ve most likely listed the correct information on multiple calendars.
That being said, there was no way I was going to screw up school picture day! On one hand, if left to fly her own freak flag, Sylvie might choose her party shoes that look like Chanel flats, leopard tights, a striped shirt and sequined skirt of non-matching colors. All of which, I’m totally fine with because I love that she has such a strong opinion about clothes. Except on picture day. I took out multiple appropriate outfits the night before so that she could still make a choice. Sylvie descended the stairs in a brand new pink and navy dress with matching purse. Her crew cut is about an eighth of an inch short of looking like a pixie cut although you would most likely never cut your daughter’s hair that short unless, say, they had cancer. Sylvie and I practice making faces—Happy, Sad, Angry, Surprised, Scared, Silly and Shy so I am hoping that she used her Happy Face yesterday. When I picked up Sylvie from school, she was thrilled to be carrying the "Sound Bucket: letter F" which I'll explain later.

After school, Sylvie had her monthly check up with Dr. Harris. She was very excited to see Annette and Dr. Harris and she changed into her new pink & red play outfit for the occasion. Michael was meeting us there.
I felt just awful putting the Emla cream on Slylvie’s chest—it’s been a month! She was hysterical. I put some on my arm so I could see what the crocodile tears were about. Nothing. I didn’t feel a thing. In the parking lot of the Reuten Clinic, Sylvie said she wouldn’t go in unless Jette was carrying her. I didn’t see Jette’s dad’s truck so sadly, we carried on. I think Sylvie is learning her letters & numbers by the parking lot levels at the hospital.
There were signs all over the Reuten clinic warning parents of flu symptoms. Sylvie was scheduled to get a thimerosal-free Flu vaccine but the clinic was all out. They asked me to make an appointment with Dr. Rosen for flu and also for H1N1. Injectible. She shouldn’t even be near the flu-mist technically.
I was a little bummed looking at Sylvie’s accessed port. We have come a long way since Michael and I were flushing her port and administering medicine in the middle of the night.
Dr. Harris and Annette came in and were just gushing about how great Sylvie looked. Sylvie is now 26 lbs. and 35.6 inches tall. She gained another 1.5 pounds in the past month and grew another ½ inch. Sylvie quickly got bored of me & Dr. Harris so she and Annette went for a walk down the hall. Sylvie was so excited to show off her moves to Annette. They called Ellen, one of Sylvie’s APNs from upstairs in Ped Onc who came running down to get bombarded by Sylvie. It was pretty cute.
I asked Dr. Harris the million dollar question which I had a hard time even saying aloud. PORT. There, I said it. If they don’t want to remove it, then they’re looking for more cancer. That’s my irrational view. So when Dr. Harris said he expected Sylvie’s AFP to be normal and asked me to call Dr. Valda to schedule the port removal, Michael and I were overjoyed!
We left. Sylvie was pissed because she couldn’t get her mozzarella sticks. Easily remedied by a trip to Target.
By the time we arrived home, there was a message from Annette with the great news that
Sylvie’s AFP is 8.9!!!!!!!!!
Last February, it was over 500,000.
Hallelujah!
We had our own little party last night, opened up our last bottle of Merryvale Starmount 2005 cab and began to plan our first vacation since December 2008.

As for the sound bucket, we had until this morning to fill it with as many things that begin with the letter F as possible. Since we're talking about Sylvie of course, naturally we have lots of Fairies, Fairy Godmother figurine, Flounder action figure, Friend (Samantha) photograph, Family photograph, fork (I left home the princess fork and opted for the Flamingo one), fishing rod from Aunt Cindy & Uncle Adam, a blue flute and the ultimate F item-- the talking ferret stuffed animal that Nurse Tenderheart the clown gave Sylvie in the hospital. I was concerned that Lucy or Lucky might eat it overnight. I was thinking for a while that F stood for F&*$ when I couldn't find a frog, frisbee or feather. Overall, I think it went well and the ferret survived another day in the house of predators.

I made it to Tim's spin class this morning and thought it was a sign that his new mix tape (yes, cassette tape!) contained obscure Jayhawks songs and even Semisonic! Oddly, I was the youngest person in the class and most definitely the only person who could name every single song... Jethro Tull, REM, Jayhawks, Jackson Browne, Semisonic, Rob Thomas and the Smithereens. While Sylvie went to the Hallowen Party at the gym with Michael this evening, I worked on the $ylvie $$$$preadsheet. It's pretty staggering to say the least.

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.

Chopped Liver

Yesterday I got another call from Dana, the advanced practice nurse for Dr. Stephen Dunn, who is the Division Chief of General Pediatric Surgery and of Solid Organ Transplantation at duPont Hospital for Children. She called the week before but I have been in a "my kid might not need a liver transplant!" mood and had not returned the call. In addition, I was still recovering from Thursday's bloody nose episodes and trifecta of grossness that had Michael and me running around frantically searching for clean sheets, mattress pads, princess dresses, diapers and wipes early Saturday morning.

Dana said that Dr. Dunn would be reviewing Sylvie's CT-scans in the afternoon and basically wanted to introduce the medical team at the Nemours Children's Clinic at the Alfred I. duPont Hospital for Children in case Sylvie will need a liver transplant. It became immediately evident to me that Dr. Dunn's team are definitely experts in a). pediatric liver transplants and b). hepatoblastoma tumors.

Dana congratulated us on the great CT-scan report and Sylvie's low AFP levels. Alpha feta protein in the blood is a tumor marker and is not something that your doctor would regularly check for. When Sylvie was first tested for it and prior to treatment in February, her level was 506 nanograms/milliliter. After 2 rounds of chemotherapy, the number dropped to 8.09.

Dr. Dunn and his team have performed 100 pediatric liver transplants since 2000 with a success rate of over 98%.

I had been a little confused because when I would do the unthinkable and search online, I would see "1 YEAR SURVIVAL RATES...5 YEAR SURVIVAL RATES" and quite frankly, I have been under the impression that Sylvie's cancer is curable and therefore too scared to ever ask this simple question:
WILL SYLVIE HAVE A NORMAL ADULT LIFE?

And Dana answered this scary question by saying that if Sylvie has a liver transplant, the procedure is CURATIVE. She also used the words FULL LIFE EXPECTANCY although there is a chance that as an adult, Sylvie might need another liver transplant.

I almost cried on the phone. Really, Michael and I have never asked this question to Dr. Harris or our medical team at HUMC.

Something I found very interesting is that because Sylvie's cancer was metastatic, even with a liver transplant, there is a [small] possibilty that could return. Therefore the risk of reoccurence with a liver resect versus a liver transplant is basically the same. I had been under the false impression that 'new liver' = no chance of cancer. Dana also told me that standard protocol for hepatoblastoma tumors is 4 rounds of chemo following surgery of any kind. That kind of blows but it's helpful just knowing that.

We talked about live liver donors (i.e. me) versus cadavers. Again very interesting. There are pros and cons to both.

We will know this week if the recommended course of action is resect versus transplant.

Did you know that liver transplants cannot swim in public pools, ponds or lakes?! Me neither but another good reason to not join the Graydon Pool this year!