Tiny Dancer

I love Ben Fold's live cover of "Tiny Dancer."

When Sylvie's APN (Advance Practice Nurse) in the Reuten outpatient clinic told me that Sylvie's counts would rebound slower and that she'd ultimately suffer worse side effects from Round Five chemo, I had nothing really to compare it to. And when Sylvie ate a gargantuan meal before and during the beginning of Round Five chemo last week and didn't vomit even once, I thought "that's my girl! Way to go, Sylvie!"

I brought Sylvie to clinic today for labs and Vincristine (chemo drug known for hair loss and awful muscle/bone/joint pain). She weighed 9.2 kg, up 0.1 kg from Monday. To say we have tried forcefeeding Sylvie is an understatement. When Sibel and Sylvie dropped me off at the train yesterday morning, I noticed that Sylvie was noticeably quiet even had her tie-dye sparkly peace sign hoodie pulled up over her head. Hmm. Upon further inspection, I realized her cheeks were stuffed with breakfast! In this case, pizza and cottage cheese. 2 points Sylvie. 0 points Mom. I digress.

Suzanne who is most often Sylvie's nurse in clinic wasn't in today; Debbie was filling in. She's a sweetheart but truth be told, Sylvie's heart belongs to nurses Suzanne and Terry. She wasn't too insane though and Sylvie let me open up her IV line so that Debbie could draw blood. They rushed the lab results while Sylvie and I chased down Siobhan so we could make bead necklaces in the art room while also avoiding the clowns who were busy in the playroom with the rest of the kids. When we returned to the "Octopus" exam room (named after the wall mural), Annette and Dr. Harlow came in. I met Dr. Harlow once or twice when Sylvie was in the hospital back in March. I REALLY like him. He has a separate pediatric practice unrelated to cancer. Sylvie was preparing her defensive strike against him while Annette tried to distract her. Dr. Harlow and I talked for a while about Sylvie's health but he seemed equally interested in her behavior, her sleeping and how Michael & I are coping with all this. I almost cried and hugged him. I continue to be amazed when one of Sylvie's medical peeps suggests something new that makes sense for example when Linda Rosini suggested that Sylvie take Zofran to combat nausea daily in the hopes of her eating better. And today, Dr. Harlow suggested that we give Sylvie Tylenol with Codeine more regularly under the assumption that her craziness is really a reaction to pain. Essentially, give it to her every 4-6 hours UNLESS it puts her to sleep. It was previously explained to Michael & me that kids do not develop addictions when they are given constant low doses of pain medication because there is never a pain/medicate/pain/medicate cycle. I hope that makes sense. Most importantly we do not want Sylvie to be in any pain and it's hard to gauge.

And then the moment of truth. Dr. Harlow walked over to Sylvie and asked her how she was doing. And like that she said, "My back hurts." And like that he gave her the most thorough physical exam she's had in a long time and Sylvie didn't even once pitch a fit. I was amazed. Annette and I kept giving each other side glances.

Shortly thereafter, Sylvie's lab results came back:
ANC (absolute neutrophil count): 140 (critically LOW but par for the course)
Hemoglobin 7.8 (should be over 11)
Platelets 10 (Critical; should be over 135)
Magnesium 0.8 (Critical; should be over 2)

And with that, the day got much longer. I called Michael and he planned to take an 11:30 train to the hospital so that I could return home and do some work. It's my first 'work from home' day since I'm back and I really don't want to screw things up.

Michael and Sylvie were at the Reuten clinic until 6 pm when they closed. Sylvie got Vincristine chemo, platelets, blood, Zofran. They ran out of time otherwise they would have given her Tylenol with Codeine or morphine. Sylvie came home with a brand new Barbie "Sea World" doll set (I'm perplexed by it) and a pink purse filled with pink on top of more pink on top of even more pink hair accessories which is ironic because I think she may be bald very very soon. She loves nurse Terry because she is like the aunt who spoils the kids rotten-- she always gives Sylvie presents. Sylvie talks about her at home, too.

I was definitely thinking that perhaps I returned to work prematurely or that two days in the city might be a little rough for the next few weeks...let's see how Friday goes. Sylvie has to go back for lab work and Annette told Michael she'll probably need more platelets. She also said upon leaving, "WATCH HER TEMPERATURE" so we are being very VERY careful.

Michael and I went to yoga tonight, picked up salads at Amano (the best grilled artichokes ever) and settled into The Real Housewives of New Jersey. This week's episode is called "Casinos and C-Cups." There's a moment in it where Theresa is getting implants and it sounds like Elliott Smith's "Waltz #2" and I just cannot possibly imagine his estate licensing the song to this show.

Tomorrow I'm going to work [in the city]. Tuesday was great. Having left work so abruptly, my desk was a time capsule. I had Sean throw out all my junk mail and heavy metal magazines as well as remove all traces of the office mascots. Mice. I was ready to get busy and work but as you can imagine, there were lots of hugs and questions about Sylvie. Michael picked up baked goods from Billy's Bakery, too, so I mean, getting me and the first batch of cupcakes on Tuesday didn't suck! The day was great. Knowing that Sylvie had a FANTASTIC time at Music for Aardvarks and multiple playdates with Sammy made it even better. Nearly missing the 6:23 express train home was even worse than usual. I was prepared to pull a Larry David if they didn't let me on board. For the record, I am usually the last person on the train and running for the wrought iron gate at 6:22:45.

Tracey, the physical therapist, is coming to the house at 9:15 am. I'm curious to know her take on Sylvie's not-walking status.