The Final Countdown

Remember this? I can't wait for pigtails, swings, messy ice cream cones, dirty playgrounds or just playing in the dirt by the duckpond.

Sylvie's three in-patient days at the hospital came and went uneventfully with the exception that every night as Michael and I switched off sleeping in the hospital with Sylvie, we said it was the last "Day One," the last "Day Two," and the last "Day Three" of chemotherapy and soon we will be a reunited family. At home.

Sylvie was so ecstatic to see her nurse friends in the clinic, play with Jette & her sister Nevada, ride in the wheel chair sitting on my lap as we cruised through the Mark Messier Sky Wing and up to the Fifth Floor that on one hand I was thrilled to see her so hapy and on the other hand her Stockholm Syndrome made me a little uneasy. But that's the difference between kids and adults. Whereas we are sick and tired of the hospital routine, Sylvie has grown to love her new friends and surroundings at HUMC. We're happy that she's happy of course.

We got situated in Room 26 with a view of the Manhattan skyline and nurse after nurse came running in to say greet Sylvie who was equally thrilled to see them.

I'm pretty relieved that the nurses and doctors refer to this as Sylvie's last round, last time in and so forth. I mean, I fully expect her to wind up back in the hospital between now and July 15 based on previous experience but I've been wrong before. She's spent around 100 days in the hospital since February. No one should have to experience that.

Sylvie's AFP level was 20 which is higher than last time (13) and alarmed us because it's a cancer marker. Her level started at over 500,000 so the doctors assure us that 20 is totally fine. I guess we just have to take their word because they are oncologists and we are just parents.

I finally brought out the pink doctor kit that my cousin Rhonda gave Sylvie and she LOVES it. It only took 4 months for her to enjoy 'medical play' toys and of course Sylvie has added her own bandages, syringes (no needles of course!), cleaning swabs to further authenticate it.

Today was a little frantic because Sylvie had to get a blood transfusion in addition to chemo, we had to make two trips to the compounding pharmacy and get a delivery of a 5-day supply of TPN at home. And she's c-Diff positive again which explains her stomach pains and diarrhea. It also means 10 days of Vancomycin and a lot of hand washing. Linda, the nutritionist said Sylvie will feel better very soon and eat a lot more. I told her that Sylvie ate 1/3 lb of salmon for dinner last Saturday night and her weight remains a stable 10.5kg.so I did not notice anything unusual about her eating habits. Linda said that if you or I had c-Diff, we would be in so much pain that we wouldn't eat a thing. Sylvie is stronger than all of us but we already know that.

Supposedly Sylvie will have surgery to remove her port following the post-chemo CTscans. That will be a very exciting day for all of us.

On the work front, it's been very hard these past three weeks juggling work and Sylvie. When I work on Thursdays, Michael has to stay home. if the TPN delivery is late and we can't start it until after 7:30, Michael has to go to work late or not at all. I was supposed to be in the office today and there was no physical way to make it happen. We go to extremes to make it look like we have our proverbial shit together but really, it's together with a very fine thread! At least this week.

This weekend, Sylvie is going to be riding in a Fair Lawn fire engine or fire chief vehicle in the Ridgewood July Fourth parade. I hope Sylvie has fun and that it isn't too noisy. I told Sylvie that millions of little boys would LOVE to ride on a fire engine! We shall see!

When Sylvie goes to sleep, we close the evening by talking about the good things that happened during the day. (Thank you Gabrielle for the idea!!!). Sylvie loves this ritual. I do too. So when we went upstairs tonight and while Michael was hooking up the TPN IV "backpack" and Sylvie & I were exchanging good things, I told her that every single day from this point forward, she is going to feel BETTER. Us too.