Five Days To Go

My Blackberry is on the fritz. I drop it once a week. I had to glue a piece back on the keyboard with Sylvie's glue stick from school. Michael keeps flaunting his iPhone to me and I love my beat up Blackberry. I need to back it up but it's such a pain with a Mac. I need to just do it. I need to just do a lot of things though!

Anyway, just in case it stops functioning, I have been trying to copy some of my Memo files. I'm an obsessive list maker... Pet names, baby names, presents, holidays, cholesterol levels, band names, books read, mix tapes, you name it, I have a list for it. I even have a hospital list that I jotted down one day, probably while driving. I was going to erase it because on one hand, I know what to bring. On the other hand, we're five days away from Cancer Be Gone! Is erasing it good or bad luck? I'm undecided. So I thought the safest place for the list is right here:

Diapers
Window stickers
Baby
Coloring, sticker, color wonder books
Plain paper and glitter pens (just a few)
Pink blanket and ariel pillow
Nightgown
"Melissa and doug" magnetic dress up, laces, birthday cake counting game
A few books to read
Playdoh
movies

Fridge:
Lemon juice
Tortillas
Tea
Turkey
2 bowls, forks, spoons,etc.

Running shoes
Yoga mat

I took Sylvie to the Reuten clinic today for labs and possible platelet transfusion. Sylvie was happy to see the nurse Terry but was pretty irritable otherwise. She still hasn't eaten in 8 days. The TPN gives her calories and electrolytes so Sylvie is holding steady at 22.3 lbs. Linda says the second Sylvie's appetite light goes back on, we'll stop the TPN because once it's back, it's back "forever." I'm not used to that! I'm used to her not eating every 7 out of 21 days. I love hearing Sylvie's medical team talk about no more chemo. It makes it more real to me. Michael joined us at the hospital later and Annette came in to go over Slvie's labs. Sylvie's ANC is 30 which is basically ZERO which means she should really stay home for the next few days or do things outdoors. In otherwords, no stores, malls, parties, classes, etc. Sylvie's platelets were 22 which is critically low however two days ago, they were 7. At 7, you'd expect bleeding gums, bloody nose and so forth (as we have experienced before) but she's really been pretty good. Hopefully she will not get a fever this weekend. In as much as I adore the nurses of 5E Pediatric Oncology, it's perfectly okay to not see them.

Michael and I are watching the Death Cab For Cutie concert on PBS Soundstage. It's pretty awesome. I can't remember any of their songs by name but I really enjoy the music. There's a song about the creation of the ocean which we're debating right now. I saw it's a love song about a marine biologist. Michael says it's just about the ocean and sounds like a song by The Cure. The cameras keep going back to the three hot chicks in the front. I don't know how the guitarist wears a long sleeve button down shirt and a wool sweater on stage. Now we're watching the Yankees/Angels game and I swear I just heard The White Stripes "Conquest" being played in the stadium. I like the song a lot mostly because the video featuring Jack White as a matador is so incredible.

I'm finally reading a book about coping with cancer that was a present from Temple Beth Tikvah. I'm only in the beginning but it's pretty interesting. It opens with a line from Dante's inferno about how good it is to look back. Looking back on the past six months pretty much SUCKS although we've definitely been able to extract some very positive messages from all this.

Sylvie's an angel from 8-9 pm. Bedtime used to be a disaster and now it's the best time of the day. We talk about "the good things" and then sing "Sloop John B" several times. We even have gestures and dance moves that go along with the song. Michael is amazed by our Sloop maneuvers and cringes when Sylvie sings, The first mate, he got drunk, broke into the captain's trunk. I put the Beach Boys version from Pet Sounds on my iPod and Sylvie sang it all the way to the hospital.

Next week, Sylvie has to go to the clinic Monday morning for labs (and definitely platelets) and Wednesday for her FINAL chemo! We're going to bring treats and have a party. I asked Annette if she and Dr. Harris could have a sit down with Michael and me. She seemed a little surprised acutally. I need to know what the next month and year is going to be like.