Once again, I hope the lack of updates communicates that things are going well, because that is still the case! The Iowa weather is starting to act up and we are realizing the sad truth that we missed the entire summer here and after a few weeks of nice weather, we are about to experience another Iowan winter.
Last weekend we went to the Iowa State / Nebraska game. Another loss for the Cyclones, but the game was a big win for Eli. We went to see the boys get off the bus to cheer them on for the Spirit Walk and Jonna Chizik saw us and threw us in with Austen Arnaud, so Eli got to go into the locker room again before the game. He got high fives from all of the players (pretty much all still wearing his bracelets) as they yelled ELI when they entered the locker room. He felt right at home playing in the locker room. You know, because getting to play in the Iowa State Football locker room before a home game is a totally normal thing for a four year old to do. 🙂 He has no idea of the significance of getting to hang out with the players, it’s just normal for him because they are his buddies. We are so grateful to Gene and Jonna, their kids, the players, and the entire Cyclone Football organization.
Today we took Eli in for his HAMA test. He was a champ and we got the blood off to NY without a problem. The price of overnighting the blood sample was cheaper today thanks to fuel prices coming down. Only $54! 🙂 We should know the results of the HAMA test on Tuesday. If it is negative (which we pray it is), it will mean that Eli can have an 8th round of 3F8 antibody treatment, which will be November 3rd through November 7th. We will also be doing scans that week to see if Eli has had any kind of relapse. MRI, CT scan, bone marrow biopsies, urine test, and MIBG. We also hope to squeeze in a trip to the dentist to get his spacers installed since those back molars were removed. Next Wednesday will start the daily shots of GMCSF to boost his immunity before treatment.
One exciting development is that we were able to stop the “Bactrim” medication. Bactrim had been given 3 days a week, twice a day, since last July. It helped prevent a specific pneumonia that kids with low immunity were prone to getting and would be devastating. During the last trip to NY, we asked the nurse practitioner when we could stop Bactrim, and she said that they could do a specific blood test if it had been 6 months since his last round of chemo (which it had). We did the test and a few weeks later we learned that Eli passed and he no longer needed Bactrim! We also stopped the appetite stimulant (Megace) since Eli should be able to maintain a normal appetite without it. So that leaves the Accutane (which we get to stop Sunday night). We were told that a high dose of Accutane for an adult was 80mgs a day. Eli takes 120mgs a day, so you can see how high of a dose that really is. Once again, we haven’t really noticed any major mood swings and a dry face is the only apparent physical side effect, which is easily treated with plenty of Aquaphor (and chicken grease). 🙂
I have been receiving several requests for more information on how people can get some Prayer Warrior bracelets for Eli. We still have plenty, so please feel free to request some! I setup an e-mail address that you can send a blank e-mail to and it will auto-reply with instructions on how to get bracelets. Just e-mail bracelets@elihorn.com and you will receive an automated message telling you how to get bracelets. You can send a blank message, it doesn’t need a Subject or Body. If you do write a note, though, I will see it, so feel free to say hi.
I’ll leave off with some exciting news. Many of you may recall that at about two months ago, we went with the Ronald McDonald House on a trip to Bradley Beach in New Jersey and Eli’s binder containing over 100 DVDs were taken (a large collection over four years in the making). I spent days calling Academy Bus (the bus company that took us all to the beach) and we kept running into dead ends. Finally, after we returned home to Iowa, they confirmed that the DVDs were gone and that they weren’t responsible for items left on the bus. I went ahead and wrote a letter to the Chief Operating Officer of Academy Bus, Thomas Scullin, and the Program Manager of the Ronald McDonald House was kind enough to put it on RMDHNY letterhead and mail it for me, along with an Amazon.com shopping cart printout that showed every DVD that we had lost and a grand total cost of $1,510. Here’s a copy of the letter I wrote: http://www.elihorn.com/academy/AcademyBusLetter.pdf
We didn’t hear back from Academy for several weeks. In fact, we went back to New York and Fordham from the Ronald McDonald House asked us if we had heard anything. I told him that we hadn’t and he said, “Oh well, it was worth a shot. I’m really sorry about all of that.” Several days after returning back to Iowa, we had a FedEx letter delivery from Academy Bus, LLC. I told Lacey, “Well, this is either going to be an official legal statement declaring that they have zero liability for the lost DVDs, or it’s going to be a check.” We were thrilled to find out that it was the latter! Here is a copy of the letter that Mr. Scullin included with the check: http://www.elihorn.com/academy/academybusreply.pdf
Obviously, we were VERY happy and Eli got a big smile on his face when he heard that he was getting his DVDs back. In fact, that night we ran out and bought a few of the ones on his list. We have since placed a big order with Amazon.com as well. We are obviously going to send Mr. Scullin a thank you note for his decision. We had debated asking our CarePage readers to also send him a thank you card, but then realized it might be quite overwhelming to get hundreds of thank you cards in the mail. So instead, I created a “Thank You” on ThePetitionSite.com where you can go and “sign” our Thank You note to Mr. Scullin and the Academy Bus company. It asks you to put in your name, e-mail and address, but it ONLY displays your name and state/country (you can also choose to not show your name if you want). It won’t display your mailing address or e-mail address and it doesn’t show them to Academy or anyone else. When you are confirming your “signature”, it has two check boxes to sign you up for their sponsors, so be sure to uncheck those so you don’t get unwanted e-mail. PLEASE take 30 seconds to go to this site and sign our thank you card: http://www.thepetitionsite.com/1/elihorn
We will write Mr. Scullin a proper thank you letter and include that URL so he can see the support they have from Eli’s friends and family for their decision to restore his DVD collection. Obviously, if you’re in the market for a charter bus in the Northeast, please don’t hesitate to give your business to Academy Bus, LLC! 🙂 I think they secured their relationship with the Ronald McDonald House of NYC if nothing else.
Thanks again for all of the prayers. We are so thankful that Eli has so many prayer warriors and we love hearing the stories of people who get to meet and strike up a conversation over a bracelet and a little boy’s story.
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