Glitter Girl

I didn't want to bore anyone with a repeat of our at home rituals over the past two days, so I thought I'd wait to share with you our first outpatient chemotherapy treatment.

Sylvie's been great all week so we took full advantage of the Spring-like weather. Tuesday morning, we went to a music and movement class at the outpatient clinic. I wanted Sylvie to learn that not all trips to the hospital involve needles and doctors. And I wanted to get rid of Sylvie's bad rap, too! Class was ok. It's not Music for Aarvarks but Sylvie definitely cannot be in potentially germy classroom right now. The ratio of Child Life/ Social Workers to kids was 2:1. The room has incredible gear from guitars galore to percussion instruments that I have never heard of before. Sylvie was obsessed with the Remo "Ocean Drum" and a set of Suzuki tone chimes. There was one other little toddler in class, Jacob. He was decked out for St. Patrick's day in a tall hat and green shirt. He was running around like crazy while hooked up to an IV pole and getting chemo. At one point, Sylvie said, "I don't need that (pointing to the pole), Mom. When my tummy hurt we went to the hospital, but now it feels better." Sylvie definitely understands what's going on. One of the social workers nodded in approval towards me and I'm confident she reported back to the staff that Sylvie is not always a heathen.

Tuesday afternoon, the ladies (Sylvie, Sibel, Lucky Dog and I) went for a stroll. Sylvie was bundled in the jogging stroller and we cruised down the block. First stop, the Beinstein's where the kids were playing outside. Sammy B asked what happened to Sylvie and I told him that her tummy still hurt. That seemed to work. Eli and Samantha came over to say hi and made pictures with sidewalk chalk while Sylvie looked on. I couldn't tell if she was sad that she was not on the pavement scribbling with them but more likely, she felt like a little princess in her puffy pink jacket and fleece Dora blanket (a present from the night nurses after a diaper explosion) looking on. After a few minutes, we continued around the neighborhood and Samantha joined us on her fancy princess scooter. At this point, our posse grew to Sylvie, Sibel, Sila, Samantha, Lucky Dog, baby Bella and me. We took up the whole width of the street. After our final destination that included zooming the stroller over the cracked sidewalk on Valley View/ Heights which is a Sylvie favorite, we made a bee line to Casa Hughes so Samantha could go to the bathroom. This may seem very boring to you, but it was a momentous occasion for Sylvie and me. We got home in time to hop into Blue Car and pick up Michael from the train.

Wednesday morning, Sylvie got up around 6:30 am and within half an hour, demanded to go outside in the stroller and take Lucky for her walk. She was pretty defiant so I got her dressed and strapped in. By 7:08 we were passing Patrick's house although I didn't see any lights on. It felt like old times juggling dog and Sylvie before 7:30 in the morning. I even got Sylvie to sit in her high chair for the first time in 5 weeks although she didn't eat a morsel. We played toddler computer games (Starfall, Zoobooks) and made beaded necklaces.

Garrett came out from the city just at the moment where Sylvie's tube leaked everywhere and we had a fashion emergency. Garrett got Sylvie a sparkly shirt that said "Princess" on it and eyed him warily as if to ask,"Who is this handsome man with great taste in kids clothes?" Garrett & I ran out for lunch at Natalie's (and cupcakes to go) and then to Town & Country compounding pharmacy to pick up more magnesium and 5 more pre-filled Neupogen* syringes. If you haven't been there, it's the real deal. Pharmacists wearing surgical scrubs, goggles and masks making medicine behind walls of plate glass windows.

*Neupogen is a natural protein known as granulocyte-colony stimulating factor (or "G-CSF") and Sylvie needs a shot daily between chemo treatments until her neutrophil counts come back to normal levels. Each shot costs about $300. Once again, glad to have good medical insurance! The shot hurt me more than it hurts Sylvie. After I give it to her, I wind up stroking her forehead apologizing to her repeatedly.

Today was a chemo day. I try to keep all hospital appointments for 10 am to avoid my screwing up and arriving either too early or too late. Sylvie got up around 7:30 and we wrestled her into a cute Tea Collection dress and leggings. I don't want the hospital to think Sylvie wears the same clothes day and night! I can't seem to get the green glitter off her face from Monday's visit. I fixed Sylvie's breakfast: Tylenol with Codeine and magnesium. Around 9:15, I put Emla cream over the location of Sylvie's port. It's a numbing agent and will diminish the pain from the needle insertion. Instead of putting an adhesive dressing over it, the nurses recommended Glad Press 'N' Seal wrap. Go figure. We sped to the outpatient clinic at HUMC and Sylvie was pretty upset. I tried to get her attention off the pending appointment and onto "Little Einstein" that was playing on the 50" Sharp Aquos flat screen in the waiting area. And we read My Little Pony books, Sylvie's new flavor-of-the-week. A few minutes later, we were whisked in by Carmen who took Sylvie's vitals.
23.1 pounds. Down from 24 pounds on Monday. This is very frustrating for me. We went back to the waiting area where we waited... and waited... and waited... 30+ minutes. Finally Annette came and brought us to an exam room where we met with Dr. Steven Halpern (not related but knows and even looks like my sports doctor Brian Hapern). Dr. Halpern was thrilled to see Sylvie's progress. At this point, it's become very clear to me that there is a huge number of folks at the hospital who know every little detail about Sylvie's hepatoblastoma tumors and condition. They are, in essence, Sylvie's personal cheerleading squad. The entire port activation (i.e sticking needle into chest), drawing blood and injecting Vincristine took no more than 5 minutes. Annette said we did not need to stick around to get the results of the blood test. After the chemo we promised Sylvie that she could make art projects so we immediately followed Siobhan to the arts & crafts room. Bribery with glitter glue works wonders with Sylvie. Sylvie spent 30 minutes making a mess with glitter, glue, beads, lanyard cord and even hugged Siobhan goodbye. It's more about Siobhan being the "toy lady" but this is progress and Sylvie sure loves glitter! Sylvie made Michael a pretty hot bead necklace on a neon pink cord that I am hoping he will wear to work tomorrow!

Sylvie's white count is still 9.2; it has not bottomed out from her 3-day chemo binge last week. Her platelets are 164,000 which is also "normal." Sylvie's hemoglobin dropped from the 9's to 8.1. Normal is above 11. In an adult, we'd be symptomatic at 8.1. Not a toddler, though. We have an appointment for Monday at 10 am and if her hemoglobin drops any lower, which you can pretty much guarantee, Sylvie will get a transfusion. The next chemotherapy is scheduled for Thursday, March 26.