Well, we arrived safe and sound Saturday morning. The flight and cab ride in couldn’t have gone smoother, it was great. Eli was in a fantastic mood in the airport at 5am for some reason, I have NO idea why. One of the ladies checking in our luggage gave Eli three airplane erasers and I think it was all roses from there as he “flew” them through each airport we were in (DSM, Milwaukee, and LGA). While we were checking in our luggage, someone said, “Hey, Eli, I follow your CarePage! Safe travels to New York.” It always makes me smile when that happens out of the blue. Eli spent Saturday afternoon and evening playing with buddies from the house.
Rich from the Ronald McDonald House staff told me that Shrek the Musical on Broadway was going on, but would end in January and that we could get cheap tickets at a TCKTS booth in Times Square. So Sunday we slept in until about 11am and then went to visit New York Grandma (Barbara from Candlelighters, NYC), Stewart and Uno. We had to stop by the new corner deli and get Eli’s favorite Egg and Ham omelet for lunch. After we hung out with the Zobians for a while, we jumped on the 6 train and took it down to where the TCKTS booth was (actually I overshot it by about 3 blocks, but that was ok because we got to see the new Walgreens LED display which is over 340 foot tall and connects 13 plasma screens together.) I went to take a picture and realized I had left my SD card in my computer. The TCKTS booth was pretty crowded, but we got in and got nose bleed Shrek tickets for half off (normally $100 per ticket). The Shrek musical was really funny and there were several times that Eli was really laughing hard. He sat on my lap the entire time so he could see better, so by the time the 2.5 hour show was over, I was wondering if I was going to be able to walk to the Subway! We did get to ride the N train, which we had never done before, so that was fun. We heard a great accappella group at the 77th Street stop singing oldies while we were waiting for our 6 train. Sunday night brought more play time with house buddies. Eli is trying hard to catch up on missed time with his friends I think!
Monday morning we got up and made our way to the 6 train again. This time we went all the way down to the East Village in lower Manhattan to see our friends from Animoto.com. You all know Animoto.com as the site that allows you to upload photos and music to create music videos instead of boring slide shows. I think that by now, anyone that knows me knows about Animoto, especially since nearly all of my videos on YouTube were done with Animoto.com. 🙂 Many of you will also remember when we went down to visit the Animoto.com Guys last February on Eli’s birthday. It was a much different time then since Eli was just finishing up his last round of chemo and was bald. The guys have moved to a much bigger office and have added a few people to their staff since then and Eli jumped right in to playing basketball and “ninjas” with the guys there. Eli spent over an hour on Sunday night drawing pictures of “planets” for the guys, complete with a rendering of the Animoto logo. He gave them their pictures and they traded him for a copy of Entrepreneur magazine (that they graced the cover of for January) and a whole slew of Animoto stickers (do they know 4 year olds or what?) Don’t let Eli know I called him 4, he is FOUR AND A HALF. I can’t wait until February when we can finally just say 5. You might as well call him 8, that’s how old he acts most of the time.
Obviously I made an Animoto video of our time at the Animoto office. 🙂 Check it out here (the soundtrack is from my college band “Bolsa de Papas” and the saxophone solo at the beginning is from yours truly. By design, the track cuts off right before I start rapping.) 🙂 :
You can also check out the photo album that holds all of those pictures here:
We begrudgingly left the Animoto office to head back North to the hospital for our first day of Round 9 3F8. It was a pretty stressful afternoon for me because Eli had zero pain on Monday. He essentially slept through it while occasionally watching me play the PSP Star Wars game (which he insists I do every time the 3F8 starts). Those of you that have been following along for a while know that 3F8 is supposed to be extremely painful (ie, labor pains during childbirth type pain) and that the pain typically means that the 3F8 is working. If there is no pain, that can often be a sign that your body has built up an immunity to the 3F8 and it is no longer effective. This immunity is called HAMA and if you are HAMA positive, you have to stop the treatment. We have felt fortunate that Eli has made it to Round 9 without becoming HAMA positive, but this lack of pain on Monday was an obvious reminder that HAMA can come at any time. I had Dr. Kushner let me know what his HAMA level was from after round 8. It was 573 (you are HAMA if you are greater than 1000), so he was “well within the negative range”, but we also know that a kid can go from 200 to 5000 in one round, so it really doesn’t tell us all that much. Dr. Kushner and our 3F8 nurse both told me not to get too concerned because many kids who have long breaks have an easy Monday and then get nailed on Tuesday or Wednesday, so I tried to not worry too much about what the lack of pain might mean.
Today I brought Eli in with prayers that there would be pain and those prayers were answered. He had pretty extreme pain for about 45 minutes and needed several Dilaudid rescues (Dilaudid is like Morphine except more effective with 3F8 pain). So, we’re not sure what that is going to mean for Eli’s HAMA level after this round of 3F8, but there really isn’t anything we can do about it except pray and be thankful that God has complete control over the situation. Thanks to everyone that was getting updates from my facebook status messages and praying for Eli’s pain levels. If any of you are on facebook.com, feel free to add me to your friends list because I can often make very quick status updates on there much easier than doing a full update here. I even uploaded a picture there on Sunday of Eli waiting for a Subway train. Just be sure to let me know that you follow Eli’s CarePage as a message when you add me as a friend, otherwise I’m likely to ignore the request if I don’t know who you are. I am the Aaron Horn in the Des Moines, IA network (NOT the headbanger from Minneapolis). 🙂 You can also search for me by e-mail address (aaron@hornit.net).
I have added some pictures of Eli playing with friends at the Ronald McDonald House here:I will continue to update that album throughout the week if more Kodak moments arise. Tomorrow we plan on going with Candlelighters, NYC to a private party at FAO Schwarz, which should be really fun. Thank you all so much for keeping us in your prayers and for your support. It is an absolutely critical component of Eli’s treatment.
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