My kid has cancer and all I got was this lousy t-shirt

I’m wearing my Strides For Sylvie t-shirt today thinking that in actuality, I have received a lot more than a t-shirt in the past 4 months. Whenever our friends and families comment about ‘coping while their eyes well over with tears or says the dreaded phrases:
1). You look like you’re going to cry
2). How do you do it?
3). Are you sure you’re okay?

I feel like I have to out of my way to declare that of course no one ever asks for their precious child to be afflicted with a deadly disease BUT that we have been able to take from the experience some really positive things that will overall better our lives now and forever. I haven't run that much since the race but still think about that day often. Scratch that-- when I first wrote this, I was in the hospital-- we since came home and ran 3.5 miles in the dark and fog. It felt great.

On Saturday night, we headed into the city for dinner at Eleven Madison Park with Andy & Catherine. I’m so used to wearing flip flops, sneakers and flats over the past 4 months that my four-inch black patent wedge heels were very hazardous. Our friend Julie had arranged for our dinner and I think the entire staff knew who we were and more importantly, that the guest of honor was in Hackensack University Medical Center getting her eight-course meal via an intravenous line into the chest. Look, Michael and I are foodies, say what you will. I'm more of an organic, locavore foodie and Michael goes for the best of the best. He's lucky that his job keeps him in contact with incredible chefs and restaurants and I've always been into food & cooking, even in my studio apartment with the miniature stove and half-size fridge. In the past five years, we’ve had some pretty spectacular meals, what I consider to be two of the best at Chateau Chevre d’Or in Eze and the Ousteau du Beaumaniere in Les Baux de Provence. Not do discount any of New York’s finest either. Michael may have been chided by his friends for not wearing a tie during his Forbes piece with a billionaire last month, but imagine Michael 4 years ago during dinner at Bouley commenting that the waiter should have been standing at attention with his hands behind his back and that it would never have happened at Daniel or Le Bernadin... I digress. Saturday night was a top three meal of all time for me. Catherine and Michael ate my share of the sweetbreads & foie gras appetizers and the next eight or so courses were nothing short of divine inspiration. After three hours, we considered that Andy’s parents were babysitting Samantha and Belle and perhaps we should end our night before the cheese course and truffle finale. Michael and I were also celebrating that his mom was spending the night with Sylvie in the hospital.

As always, our punishment for a great night away from Sylvie is always a hellacious next day. And Sylvie lived up to our expectations. Whenever Sylvie’s counts get low, she becomes the demon-child. Dr. Diamond was on call and he ordered up some morphine and platelets for Sylvie. I was nervous about my night at the hospital with Sylvie yet as soon as Nurse Lisa came in, Sylvie turned on the charm. Aside from the 20 or so wake-ups for loud beeps, oral antibiotics and magnesium, line changes and lab work, Sylvie essentially slept until 8 am when Michael dropped by before work with my morning tea. I cannot believe I haven’t had coffee in 6 months. I enjoy tea but I love coffee.

Dr. Appel is on the floor this week, which means that he is the attending pediatric oncologist on the 5th floor all week. He’s a very sweet and kind doctor. I was surprised to see him make rounds to our room before 8:30 am but happy that Michael and I could talk to him together. He said that Sylvie needs another blood transfusion today and since she hasn’t had a fever since the very first night (which is usually the case) she could technically go home although she is still getting nutrition via TPN and Fortaz antibiotics also through the port. After discussing for a while we all decided the best thing is for Sylvie to go home Wednesday after her chemo. She’ll most likely go home needing TPN for 12 hours at night and perhaps Fortaz 3 times a day intravenously and Vancomycin orally 4 times a day. It’s never easy but this is at least ‘manageable’ and allows both Michael and I to work.

Speaking of which, I’m went home at noon today to do some work while Sibel stayed with Sylvie. Michael arrived at the hospital around 3:30 and Sylvie was playing with Siobhan’s doll Molly. In fact, she fully cleaned and accessed Molly’s double-port and Heparin-locked it. Michael and Siobhan were amazed. Sylvie knows exactly what is going on and is the only toddler on the block who says “No Gauze!”

I picked up Samantha and brought her back to the hospital for a cupcake pizza party in Sylvie’s room. Sylvie asked for her this morning and said Sammy would make her tummy feel better. Samantha brought Sylvie a Cinderella swimsuit for Sylvie to wear when she’s feeling better.

Michael’s mom is sleeping over again tonight so that I can go to work tomorrow. It sucks that in order for me to go to work, either Michael’s mom or mine has to forego work themselves but for now, that’s our only choice. I feel like our extended family is one fine tuned machine working in sync.

I’m psyched to report that Sean from my office returned from lunch today thrilled to tell my friend Kerri & me that he just walked past Rob Patterson whose movie trailer is right up the block from our office!!!!! I’ve worked with musicians and artists my whole life never once losing my cool yet hearing that the twenty-something star of a vampire movie whose target audience is literally half my age is very exciting to me.

Sylvie went from eating organic gummy candy swirls to salmon and rice with the occasional piece of aged gouda cheese! Michael and I keep poking each other with excitement. There is hope yet.