So once again, I am behind in updating and leaving everyone in the dark about what went on last week in NYC. Essentially, the rest of the week was much like the first two days. A LOT of pain, which actually came in two waves for some reason this time. Eli would go through the pain, then start to fall asleep, and then it would come back. That was a new one for us! The hives were also really bad this time. Specifically, Eli kept getting hives in his THROAT! So many days, Eli would start coughing from the hives and wouldn’t be able to stop for an hour straight. Instead of being able to play in the evening, Eli was pretty much knocked out for the rest of the night. The mornings before treatment started were just fine though, so we could use that time to do homework or have some fun in the city.
Speaking of fun in the city, we were able to spend time with our great friends in Manhattan, the Zobians. They are more like family, really. Eli calls Barbara “New York Grandma”. We got to visit our great friend Mary at Fiber Hair Spa so Eli could get his traditional “first haircut after chemo”. Long time CarePage followers will remember that Eli’s first haircut after he first got his hair back after chemo was a mohawk, given by Mary.
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As you know, Eli lost his hair again after his chemo this year, so now that his hair was growing back, it was time for another visit to Mary (he wouldn’t have ANYONE ELSE do his first haircut after chemo). This time, however, we weren’t able to do a mohawk because “extreme haircuts” aren’t allowed at Eli’s school. So Mary got creative and gave Eli a tasteful spiky look that he loved (and it looked great of course). Our September in NYC album has pictures of our visit with Mary. Thanks, Mary, we love you!
You’ll also see that we got to hang out with our little friend Dakota and her mom Stephanie for a few days since they were in NYC until Wednesday. Dakota was getting chemo and is now inpatient in Iowa City with a neutropenic fever, so please keep her in your prayers.
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We also got to see our good friend Anthony Causi on Friday morning. Anthony is the sports photographer for the NY Post. He takes pictures of the Yankees, Mets, Giants, Jets, Rangers, Boxing, etc. He is an amazing photographer and Barbara has recruited him as the official photographer for Candlelighters, NYC. Anyway, Anthony offered to take pictures of Eli while we were in NYC, but not only that, he invited his friend Kelly along to paint Eli’s face. Kelly is from LA and is a makeup artist in Hollywood. She is in NYC for a few months doing makeup work for an Edward Norton movie that is in production. She painted Eli up as a dragon, which was TOTALLY up Eli’s alley. He LOVED it, but was very serious for the session. After the facepainting, Eli showed Anthony some of his favorite things to do in Central Park. Namely, playing at the playground, climbing the rocks, and riding the marble slide! I will be doing an Animoto.com video soon. For those of you on Facebook, you’ve probably already seen the pictures. For the rest of you, you’ll just have to wait I guess. 🙂
We all wore our Beat Cancer shirts for the photo shoot and it was great. For those of you that didn’t get a shirt ordered, you’ll have to wait until next year to get one. We have officially shut down the ordering for the shirts. It was a HUGE success and we sold over 4,000 shirts. I’m sure we’ll have a better final count later (I’m guessing closer to 5k). September 12th was National Childhood Cancer Awareness Day and we celebrated it with 150 other people that have children with pediatric cancer. We were given free hillside tickets and a tailgating tent. It was an amazing time, even though our Cyclones had a bad day against the Hawkeyes (35 to 3 was the final score). It was fun to see the Cyclones wearing gold ribbons on their helmets and BOTH teams were wearing Eli bracelets! Several of the AP photos on ESPN.com for that game showed players with Eli’s bracelet on, which is always fun to see. Those players are great supporters of our kids. The Iowa dance team even came over to our tent to take pictures with the kids (thanks Ashley!) and the players took pictures with the kids after the game as well. Here are some of my pictures. It was a great day and thanks to everyone for the amazing support of buying Beat Cancer shirts!
So anyway, last Saturday we drove straight back home (left at 5:30am and pulled in our driveway around 11pm). Eli went to school on Monday, and believe it or not, he went to school EVERY DAY this week! This was the first time that Eli went to school for an entire week without missing any school. He didn’t need any transfusions and in fact, his counts are starting to go up on their own. We are very happy about that! We will test for HAMA on 10/8 and find out on 10/13 if he is positive or not. If he is HAMA negative, we will go back to NYC for another round of 3F8 on 10/19. If he is HAMA positive, we will likely start a low dose chemo to get his HAMA level down. We are obviously praying that if it’s God’s will, Eli will be HAMA negative so we can do another round of 3F8!
Again, sorry that CarePages isn’t supporting HTML still. It REALLY hinders the way these updates look because I could be including actual pictures rather than just links to them that you have to copy and paste. sigh. Oh well, what can you do! Thanks to everyone for all of your prayers and support!
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