People are starting to get antsy for an update, I can tell. 🙂 Well, unfortunately the scheduling didn’t work out as nicely as I had hoped. Since Eli’s counts are still low, they decided to do his test dose of 8H9 next week and his real dose the week following (I was hoping for the test dose this week and the real dose next week). The good news is that after getting some platelets on Friday (they were back down to 6), his platelets on Monday were 54 (which is fantastic since they wanted it over 50 for 8H9). However, his white count and ANC dropped a bit since we stopped the G shots last week. His white was 1.4 and ANC was down to .5. However, that is still pretty good considering we stopped the GCSF shots. Hopefully when we get them checked again tomorrow, they will be higher. We shall see. The 8H9 will attack Eli’s counts, so there is a POSSIBILITY that the test dose will knock them so low that he can’t get the real dose. If that happens, we’ll see what they suggest. We have a brain MRI scheduled for Friday and a spine MRI scheduled for next Monday. Otherwise, it’s mostly a “counts” week. His appetite has been good and I think he has been feeling less “tired” lately. His weight yesterday was 15.5 kg (~34 lbs), so I can’t really complain too much, although he definitely looks skinny. I think his height accounts for some of that.
Eli and I went to a Mets game on Sunday afternoon since there were two extra tickets in the “box” available. Since his counts were good, we went ahead and took the subway. Sorry, no good “homeless man attacking a business man” stories to tell this time. It was pretty uneventful. The game was great since the Mets beat the Marlins 3 to 2. I think it was also the first time I managed to go without stepping one foot into the Mets Team Store!
Today we didn’t have to go to the hospital at all so I finally did something I’ve been wanting to do since I knew we were coming to NYC over a year and a half ago. I took Eli to the Orange County Choppers (OCC) world headquarters in Newburgh, NY. 🙂 I don’t know if anyone watches that television show on TLC (American Choppers), but I used to watch it all of the time. Anyway, since we had a free day, I finally bit the bullet and made the arrangements. I used a local car company called DriveMint.com. They have cars scattered throughout NYC in parking garages and you jump online and reserve them to rent by the hour. I found a car in a parking garage 1 block away that was available during the times I wanted it (9:30am-4pm). You use a card to swipe over the windshield and the car unlocks itself and the keys are in it. When you are done using it, you return it to the garage and push a button and it registers as being returned. It’s a very cool system and they rent the cars during the weekday for $5/hr. ($9/hr at night, $11/hr on weekends, and they also have daily rates). The gas is free and you get 140 miles/day. It turns out the O.C.C headquarters are 64 miles from the Ronald McDonald House, so I was able to get there and back in under 140 miles and didn’t have to pay a dime for gas. The rental car cost $38.79 for 6.5 hours, at least half of what a rental car around here would cost for a day (plus the gas wouldn’t have been included). It was an hour and a half drive, which is just about the length of one of Eli’s movies in his little DVD player. We had a great time looking at all of the motorcycles. I especially loved getting a picture of Eli in front of the Lance Armstrong “Livestrong” chopper and the very cool Make-A-Wish chopper! We didn’t “meet” anyone (didn’t really try to either), but we got to go back to a public viewing area to watch the guys work. We saw Rick and Lee while we were there, but it was very slow and there was no film crew today or anything. Eli had a Pittsburgh Pirates die-cast chopper picked out to take home, but at the last minute he saw a Chicago Blackhawks one and decided he wanted it instead. I’m telling you, it’s ALL about the mascot. 🙂 Overall, it was a very nice break from the city and it was a very pretty drive. We ate at a local Mexican/Seafood place in Newburgh called La Hacienda (I think every town in America has a restaurant called La Hacienda) that had $5.99 lunch specials and $4.99 kids meals. I had a steak wrap with the smallest caesar salad I’ve ever seen and Eli had the popcorn shrimp and ate over 20 pieces along with half of the bowl of chips and salsa! Like I said, the appetite isn’t so bad right now. The lady even turned SpongeBob on for Eli to watch while we ate. Pictures of the motorcycles? Of course!
Here is an animoto video I created:
And here is the photo album in case you want to take a bit longer to admire the great bikes.Tomorrow is the annual “Pediatric Oncology Prom” at Sloan. They have had gowns available for the girls to pick out for several weeks. The boys get Tuxedo shirts tomorrow before the big event and they basically have a big party in the cafeteria for 3 hours or so. Chloe Shiver (cp: PrincessChloe) has asked Eli to be her date. I don’t think she ever got a straight answer since the blushing Eli turned around and ran out of the room faster than you could say “corsage”. Chloe’s mom has resorted to bribing Eli if he’ll at least have his picture taken with Chloe at the prom. I think it’s working. If it does, I’ll be sure to get a picture posted. 🙂
That’s it for now. I’ll let you know if tomorrow’s counts change “the plan”. Also, thanks again to everyone who donated and shaved at the St. Baldrick’s event in Ames. The last number is over $16,000! That money goes directly to pediatric cancer research, so thank you very much. Also, thanks to those of you that have been checking out the www.videosofhope.com website and telling people about it. You can easily make animoto videos just like the one I posted here and benefit the Band of Parents at the same time! “That’s what we call a win-win scenario.”
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