CST

Having been in-patient for 30 days and nearly $250,000 later, today was Sylvie's first day being treated as an out-patient.
The outpatient facility is located in the Don Imus-WFAN Pediatric Center for Tomorrows Children and is comprised of examination rooms, treatment rooms and then the 'fun' rooms including a massive playroom, a video game room (for the older patients), an art room (a cornucopia of fun), a music room (I noticed several guitars including a fancy Martin!, a cello, a giant percussion arrangement, a fancy electric piano and even some recording gear) and a virtual classroom.

Until reading an article in The New York Times about a guy with prostate cancer, CST was the time zone in Madison, Wisconsin, where I went to college. From this point forward, it is Cancer Standard Time. Nothing is fast. Few things are timely. And lots of waiting. I mean lots. I'm very Type A and obsessive over time so CST is quite an adjustment. And, I really have nothing other to do but wait. And wait. And wait some more.

Sylvie had an appointment for "labs" which means checking her vital signs and drawing blood either from the port or in today's case, from her finger. They monitor the counts to see if Sylvie has an infection, needs blood or platelets and is 'healthy enough' for chemotherapy. The appointment was for 10 am and I estimated in advance the time to check in, fill out paperwork, wait, dig out Sylvie's insurance card from my overstuffed fancy wallet that I just noticed has magenta glitter glue all over it. I paid the $30 copay in advance just to hurry things along. Then the nurse would take Sylvie's vitals, draw blood and send to the lab. From there, I also built in time for when the lab work would be returned to the clinic, assuming everyone would be out to lunch. Therefore, I did not expect to get home before 2 pm. For a blood test.

Sylvie was pretty apoplectic when we pulled into the parking garage. "I feel good! My stomach is better, I want to go home," she yelled from the back seat. For the first 20 minutes she was very focused on getting the heck out of there. When the nurse took Sylvie's blood pressure she was so nuts that it was 160/100 which believe you me, is not right for a toddler. We finally gave up with the blood pressure. Sylvie's weight is down to 24 pounds and luckily no fever. Siobhan from Child Life (social worker who focuses on the kids and not the parents) was waiting for us and Sylvie seemed relatively happy to see her because basically, she comes with toys. We meandered to the playroom although I was pretty skeptical because there were two women in their mid-50s dressed like clowns. Indeed Sylvie hated them and I was a little jealous watching three other toddlers run up to them squeal with joy. Not my Sylvie! After fifteen minutes of fun, Siobhan asked me if the lab knew we were there. I tell you, I have no idea how the place functions, no one told me anything about the lab procedure and now I felt like I personally added a quarter of an hour to our stay there not to mention Sylvie's misery. We quickly went over to the lab-- the place looked familiar, but really, I had no idea we were supposed to get a piece of yellow paper and wait on a chair outside. One, two, three and we were done. It was 10:48. Back to the funhouse. Sylvie was eager to get busy so we went to the art room where I don't know who was more amazed, me, Sibel or Sylvie at the cornucopia of art supplies. We started with glitter & glue and made messy pictures. I was proud that Sylvie cleaned up after herself. From there, Sylvie made a bead necklace and dazzled Siobhan with her pretty awesome small motor skills. And we finished up making Play-doh geometric pieces that looked like Dwell Home fabric patterns. I dare say, Sylvie seemed pretty happy with the endless supplies and things to do. Sibel and I had glitter all over us. Sylvie's long eyelashes sparkled with green glitter, too.

In walked Dr. Harris who is the Director of Tomorrows Children's Institute and Chief, Pediatric Hematology / Oncology. Sylvie wasn't supposed to have an exam today but Dr. Harris was genuinely excited to see Sylvie, having been out the previous week. So we followed him into an exam room where we were met by Annette who is another advanced practice nurse. Sylvie was pretty nuts but not as bad as before. Dr. Harris was overjoyed when he felt Sylvie's abdomen. Literally, he was jumping like a little kid and he's at least 65 so watching a silver-haired doctor in fancy clothes and shoes jump for joy is pretty cool. He said that Sylvie's tumor has definitely gotten a lot smaller and isn't in the lower left part of her abdomen anymore. Her blood counts are all in line with her treatment. Hemoglobin is under 9.5 so hopefully it will hang in there long enough to not need a transfusion before Thursday's chemotherapy. We talked about Sylvie's progress and Dr. Harris said that if Sylvie spent 4 months either in the hospital or lying on our couch at home, it would not surprise him based on her very aggressive chemotherapy regimen. Therefore when I told him that at 8:30 last night, Sylvie insisted on going to the "candle store" (really Kings in Midland Park), he was very pleased. Linda Rossini the head nutritionist came in and we talked about weight/food. Of course Sylvie mentioned at this point that she wanted pizza but it was a trick, I tell you. Anyway, they aren't concerned about her weight since she's getting nutrition from the ND tube. Linda also pointed out that Sylvie was pretty well behaved. I hope she shares that with Dr. Steele.

From there we left and when I looked at my watch, it was 1:00 pm. Yeay! Ahead of schedule. We went for pizza and I'm sorry to say that Sylvie said the pizza made her mouth hurt and wouldn't eat it. We got home around 2:20 from our adventures and Maeve from Montessori Learning was in our driveway with an incredible "Happy St. Patrick's Day" poster featuring shamrocks painted green by each of Sylvie's classmates. And her very own Irish Soda Bread with cranberries!!!! Despite being Jewish and of Eastern European descent, I have to say I am feeling so Irish this week!!!! Sylvie is even wearing her special St. Patrick's Day t-shirt today. I think Sylvie was very happy to see Maeve, too, and I hope it wasn't a shock to see the lethargic, skinny, balding Sylvie in my arms. Shortly thereafter, I gave Sylvie a shot of Neupogen, her magnesium and some Tylenol with codeine. Needless to say she fell asleep. One of my goals this week is to figure out how to post photographs within the body of this blog. It is not as easy as it looks!

Sammy and Catherine dropped by after dinner, Sylvie was pretty psyched to see them and gave Sammy the beaded necklace that she made earlier in the day. It's the first time she's given Sammy something and was very cute. Andy got home from his fabu trip and came by to see his "other wife" Michael and of course, Sylvie.

I set my watch last night for 3:00 am so that I could put more Complete in the ND pump and avoid the scary beeps. I slept through the alarm (shocker as I sleep like the dead), woke up just in time anyway, was so tired that I didn't put enough food in and was awakened at 5:45 with the screeching beeps. Sylvie said to Michael today, "The tube made noise last night and woke me up." I hope Michael sleeps on Sylvie's floor tonight. I might need to go to sleep right now or pretend (while he's at his "other wife," Andy's house. :-).