Happy Mondays

When I say that Sylvie has smiled and laughed more today than in a LONG time, like a pre-cancer time, it's an understatement. Michael and I have been having fun for the past few hours with Sylvie and keep glancing up at one another in amazement. She's laughing like a hyena. Except when the doctors and nurses come in. Then she turns into her psychotic mean little self.

Sylvie woke up last night at 3:30 when the nurse came in with antibiotics and then at 4 am when she returned to change Sylvie's [IV] lines. She did not go back to sleep. Since all rules are out the window right now, I put on the Ni Hao Kai-Lan DVD and she probably watched it for 2 hours straight. Sorry-- mom's need their sleep too! In addition, in anticipation of the onslaught of chemotherapy today, I wanted to be ready for anything.

Sylvie's team visited in the morning to say that her counts are still very good but they wanted to repeat (for a third time in a 7-day period) the ultrasound because there might be a blood clot in her liver which would need to be addressed before continuing further treatment. Chemo has been pushed back to Tuesday so long as Sylvie does not run a fever today. Despite Sylvie not having eaten a smidgen of food in well over a week, they are not concerned because of the 800 calories a day that she receives via the NG tube. I was concerned that she would forget how to eat but the nutritionist said that will not happen and not to be worried about it. They ordered more Physical Therapy for Sylvie to get her moving and grooving again. Sylvie's port bled a little bit but it doesn't seem to be anything serious.

I ran to the gym, ran on the treadmill and then ran back to the hospital while blasting the Afghan Whigs. I really wanted to listen to the new Ryan Adams mix I made on my iPod but Blue Car's Pimp-My-Ride stereo takes forever to scroll through artist names listed alphabetically by first name. SO, it was Adam and the Ants, Alkaline Trio or the Afghan Whigs.

Later in the afternoon, Dr. Steele dropped by and she was excited because Sylvie's ultrasound came back totally perfect.
Dr. Steele excited = Audra excited. Sylvie pinched her so hard that it will probably look like a hickey on her wrist tomorrow.

Following that, a massage therapist from Ho Ho Kus, Michael Schwartz, was offering complimentary massages to the moms of Ped Onc floor, so I headed downstairs to the outpatient clinic. What a treat-- my fused spine, hardware and lots of knots is no picnic. When I returned to the Honeymoon Suite, my brother Scott was reading a princess story to Sylvie while my parents hung out. Then, Siobhan from Tomorrow's Children/Child Life came and had Sylvie laughing in stitches. Shortly thereafter, Michael arrived from work and he and my brother cracked jokes about my getting a massage. I think, they said something on the order of "Do the fathers get lap dances on the second floor?" It's ok to laugh. It's cancer humor.

Next, Dr. Harris, who is the head of Pediatric Oncology, came by to say hello. He said that Sylvie's doing great and was happy to see her fighting spirit had continued for the past month. In 2 weeks we're going to do new CT-scans and make a determination regarding the surgical course of action. He said that Sylvie's chemo regimen is very strong for a 25 pounder and that if she spent the next 4 months in bed, it would not totally surprise him. In addition, the 5-FU caused horrible mouth sores previously so if they return, Sylvie will immediately start getting morphine continuously. That being said, he hoped we could go home perhaps on Sunday 3/15. I'm not counting on anything at this point.

One thing that bothers me a little are the placards adjacent to many of the common use rooms named in memory of deceased children who were treated here. It freaks me out and makes me sad. I wonder if Michael has noticed this.

Sylvie's wearing her custom-made princess hospital gown (thanks Ann!!!) and Sleeping Beauty socks (thanks Caryn!!!). She's playing with a new set of eBoo stacking blocks, hippie non-toxic nursery rhyme blocks and Play-doh in bed right now while watching Kai Lan yet again. It's no wonder why she likes it here.