Yes, for those of you that didn’t see my status update on Facebook earlier this week, Eli is HAMA negative (that’s a good thing for the newcomers to Eli’s site), so we have the green light for our 8th round of 3F8! We are also doing scans this week, which means Eli will have 3F8 treatment in the morning, and then a scan (MIBG, bone marrows, CT, MRI, etc.) each afternoon. Scan week is a stressful week. You go for several months living in a world where you believe your son has no evidence of disease (NED). Every three months or so, we go through scans to see if that is still the case, and in a world where relapse is more of the rule than the exception, we just pray that Eli continues to be free of active cancer. Someone asked me today if it was a big relief to be NED. My answer was, “No, it’s not a big relief, it’s a big stress waiting for the phone call that says your son is no longer NED and that the next step involved chemotherapy again (something we haven’t had to deal with for 9 months or so now).” That is not to say that we aren’t grateful for Eli’s NED status, we thank God for that daily, but these weeks where we are looking for disease make us realize that it’s definitely possible that something bad will show up. However, it’s out of our hands, so we are glad that we can turn that worry over to God and trust in His plan.
We finished up another round of Accutane a week ago and the side effects were about the same as last time. There were a few more “moody” moments that were slightly outside of the normal Eli behavior range and his skin was definitely dry, but moisturizer and patience seemed to be good remedies. Eli did come down with an ear infection last weekend (which we confirmed with a trip to Urgent Care in Ames last Sunday) and guess what they prescribed for him? A high dose of Bactrim! The drug we were just celebrating that we could stop giving him was what they suggested for Eli’s ear ache! It actually wasn’t that bad because it’s in a pill form, so Eli could take it just fine. We disagreed a little with the high dose they prescribed him, so we followed our guts on the amount. We had Dr. Paschen check Eli’s ear on Friday and he said that everything looked great, so we could stop the Bactrim (again). If all goes well, this Monday will be the first Monday in over 16 months that Eli hasn’t had to take Bactrim!
Last weekend was a lot of fun. We once again did some tailgating before the Iowa State game with some friends after high fiving the players coming off the bus. There were some other young boys at the tailgate for Eli to play with, so he had a great time. My brother Adam (Uncle DoDo) and his wife Jo (Aunt JoJo) came up to visit and tailgated with us before the game with our friend Philemon. They didn’t go to the game with us, but it was great getting to see them for a short time before the game. Someone randomly came up to us and said, “I don’t mean to sound creepy, but is this Eli Horn?” 🙂 His mohawk had proceeded him and he was easily recognizable by someone who had been forwarded his CarePage when the Cyclones made him an honorary team player. It is always so cool when we meet someone out of the blue that knows all about Eli’s battle.
We lost to Texas A&M, but we had great seats (thanks once again to the Chiziks) and sat right behind Deffensive Back #36 Kyle Walker’s parents. It was fun chatting with them and getting to share Eli’s story. Eli made a trade with Kyle’s mom. She gave him a button with Kyle’s picture on it, and Eli gave her one of his bracelets. Here are some pictures from the tailgate/game (click on the thumbnail to see the full album):
We also came across a new Cyclone Football Player Eli bracelet sighting. The Schepplers cut out this picture for us from the Ames Tribune that was taken of #13 Mike Brandtner, the punter for Iowa State. He is quite boldly displaying his bracelet! I can’t tell you how much these players mean to us.
Today has been a very long day. First of all, we were up packing until late (about 12:30am) and then had to get up early (3:30am) to get ready and out the door for our early flight out of DSM. Another huge thank you to B.J. and the Miracle Miles program at Midwest Airlines. Since it was such an early flight, that put us into NYC at 11am this morning. Eli slept most of the first flight and half of the second flight, including the entire drive to DSM, so I’m sure it didn’t seem like a very long trip to him at all. As we were flying over Shea Stadium in Queens, Eli shouted “Hello to all my friends!” He was excited to see his buddies for sure. As he keeps pointing out “I get two whole days of fun before I have to start treatment.” The reason we came in on Saturday as opposed to Sunday is because Sunday is the HUGE NYC marathon. There was no way I was going to try to come into the city on Marathon day. We plan on trying to find our friends that are running in the marathon (Lou, Rich, Randy, Yuki, Dr. Kushner, etc.) so we can cheer them on since they run right past Memorial Sloan Kettering and the Ronald McDonald House.
Anyway, I wasn’t in the city for more than 10 minutes before I got into two different arguments with native New Yorkers, one of which was a cab driver and the other was a very impatient old man that thinks it should take no more than 40 seconds to unload your luggage and pay a cab driver in front of the Ronald McDonald House. Welcome back to NYC! 🙂 Our room wasn’t ready since there was a communication breakdown at the house, so we used our friend Griffin’s room to store our stuff for a while. We immediately took off for a Ronald McDonald House Charity Fun Run in Central Park. We showed up 10 minutes too late to have Eli actually run a race, but he still had a blast playing with his friends Zach, Sam, Ben, Griffin, and Justin. We ended up being at the park for 4 hours. We got back in time for a pre-marathon pasta binge at the house and after an hour nap or so, Eli is going 100 miles per hour with Justin. Since our room wasn’t ready, they just moved us into another room that was clean (1102). It’s our first time on the top floor, but our original room was only two doors down from Justin, so Eli considered our move up 3 floors to be a huge downgrade. Doesn’t seem to keep them from playing with each other though!
Here are some pictures of Eli catching up with his buddies at the Fun Run (click on the thumbnail to see the full album):
Griffin’s dad, Lou, calls that main picture the “album cover” because it looks like a great rock band album cover. 🙂
We wanted to thank all of you so much for checking out the “thank you” petition we are sending to Mr. Scullin at Academy Bus Company for replacing Eli’s DVDs. This past week was really fun because boxes from Amazon.com and DeepDiscount.com kept showing up on our doorstep as we started rebuilding our DVD collection. I am sending out the Thank You note to Mr. Scullin that will include the link to the petition so he can see how much of an impact his generosity made on Eli and all of his supporters. http://www.thepetitionsite.com/1/elihorn
Thanks to everyone in advance for your prayers this week. We are praying that the 3F8 isn’t unbearably painful for Eli this week. We are also praying hard that Eli’s scan results show that he is still NED. Meanwhile, we are still keeping our great friends, the Edwards and the Hurts in prayer as both of their amazing boys have been moved to the “hospice” stage of the battle. This is really hard on us as Lacey and I became very attached to these two families as we all spent so many months together in NY. We can’t bear to see these little guys in so much pain and ask God to really make His peace that surpasses all understanding known to those families.
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