At the risk of sounding like a “normal” family, there really isn’t that much to report right now. Eli continues to go to school and hasn’t missed a single day in a very long time! His counts are pretty decent and he has been a true champ about popping his oral chemo pills every night around dinner time. This chemo (called Temodar) is not a very high dose and he basically takes it every day for 42 days, then we go back to the Accutane drug for 2 weeks, then back to Temodar for 42 days. That cycle repeats itself several times and it’s all just a part of the 8H9 protocol that he has been on for the past 9 months since they found (and removed) the small tumor on his brain. At one point, Eli’s teacher at school said to me, “You know, a lot of kids in Eli’s class have been out sick at one point or another, but he doesn’t seem to be catching anything. Why do you suppose that is?” My answer is that the most important aspect of Eli’s treatment is still in full force. His prayer warriors. On paper, it doesn’t make much sense that Eli would be able to avoid getting sick, but with so many people praying for him, it doesn’t surprise us one bit. Eli’s class actually put together a care package for him (as well as the rest of our family) that included tons of toys and activities. He was so thrilled to see us bring in a huge basket and when we told him who it was from he said, “Awww, they didn’t have to do that!” He has some very special classmates and we are so thankful to have them in our army of prayer warriors for Eli.
We will shamelessly continue to ask you for those prayers because last night, we had Eli’s blood drawn again and overnighted to NYC to test for HAMA. If he is still HAMA positive (we won’t find out until Tuesday night or Wednesday morning), then we will likely try a chemo/antibody cocktail to try to get his HAMA level down. If he is HAMA negative, then we will be on our way back to NYC for another round of 3F8. No matter what, we need to go back to NYC at the end of this month to get a full workup of scans. Bring on the scanxiety! It’s nice when we can do the scans and 3F8 in the same week, but if he’s HAMA positive, we’ll likely just zip out to NYC for a few days of scans and zip right back.
One fun thing we did on Wednesday night was an interview for The Paul Rhoads Show. Paul Rhoads is the new head coach for our Iowa State University Cyclone Football Team and he is doing an amazing job. Well, every Sunday night at 10:35pm, our local ABC station airs a program that highlights the game from Saturday. The guys that do the program noticed that many of the Cyclone football players are still wearing Eli’s bracelet on (and off) the field, so they asked us to come in and do a quick interview so they could feature Eli on an upcoming Paul Rhoads Show! They interviewed a few of the players and it will either air this Sunday night or a week from Sunday. It really just depends on if the Cyclones beat the Cowboys tomorrow or not (and of course we hope they do!) If they do win tomorrow, they’ll likely delay the feature until the following week. I might be able to get my hands on the show for those of you that aren’t in Central Iowa, so stay tuned.
Speaking of the Oklahoma State game, we will actually be able to attend the game this weekend! We were generously given two tickets from a previous Make-A-Wish family. We were trying to figure out how to buy tickets for the boys so all four of us could go, and last night one of the ISU football players (Kyle Slifka) texted me and asked if we wanted 2 tickets for the game! So now we all get to go and have fun tailgating before the game to boot.
While we are here trying to find some normalcy in life (if you can call getting weekly bloodwork and taking nightly chemo “normal”), we are still very much connected to our friends in NYC. There are so many kids in different stages of their battle, and frankly a few of our little friends have lost that battle in the past couple of months. It’s always hard to read those updates, but it’s a brutal reality of the world of pediatric cancer. Thank you for keeping our other little friends in prayer as well.
I know that many of you have lamented about not getting an e-mail from CarePages when I update the site (not that I update it nearly as often as I used to). I don’t know why that is, and CarePages is far from helpful about the situation when I ask them about it, so I decided to take things a bit into my own hands. I have created a very simple form that you can fill out if you want to be alerted every time I update this CarePage. Essentially, I will update CarePages and then shoot a very quick email out to everyone who has filled out this form letting you know that I posted an update in case you didn’t get an e-mail from CarePages. If you have never had a problem with getting notifications from CarePages, then don’t feel like you need to fill out the form. I just created it for those that stopped getting the auto generated e-mails from CarePages.com. Just go to http://www.elihorn.com/notify.html to sign up for e-mail alerts from me whenever I post an update here. It will be a very simple one liner, just letting you know that an update has been posted, nothing more than that. Hopefully that helps!
Well, that’s it for now. I’ll try to get back on here to let you know about Eli’s HAMA results next week. Thanks again for your continued support and prayers. We appreciate them VERY much!
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