After going so long without an update, I am quite certain that many people don’t remember their password or even their username for this site. 🙂 I have actually worked with the developer of the login plugin and he graciously made it so that if you have forgotten your username/password, you can simply click on the Forgot Password link in the Recruitment (Login) tab and enter the email address that you registered with. It will reset your password and email it to you along with the username that you used to sign up for Eli’s blog. If you still have problems, please let me know (techsupport@elihorn.com) and I will be more than happy to help you. Remember, you can get these updates via email by using the form off to the right. Don’t have a login? Sign up for one quickly by clicking on the Recruitment (Login) tab at the top!
Well, where do I even start? By going over 3 months without an update, I fully expected to start off by saying, “I’m sorry I haven’t posted for so long, everything is going great and Eli is still NED.” Unfortunately, that’s not how I get to start this one. In regards to Neuroblastoma, Eli’s scans from September once again came back negative, which is great news. The bad news is that a routine blood draw last Friday showed leukemia blasts in his blood. Therefore, the worry of his MDS (Myelodysplastic syndrome) turning into secondary leukemia (AML) has become a reality. So after keeping the Neuroblastoma at bay and avoiding a transplant, it looks like Eli will face another kind of cancer and have to undergo a transplant after all.
So on Monday, we came in to Blank Children’s Hospital in Des Moines where Eli had a bone marrow biopsy done to confirm what was found in the bloodwork (it was confirmed) and to get started right away on chemo. Obviously we are following the recommendations of NYC and they worked with Blank over the weekend to spell out the protocol that Eli should be on. As usual, it’s not a COG (Children’s Oncology Group) protocol, but unlike before, the amazing new doctors here at Blank are willing to go by Memorial Sloan Kettering’s protocol and let us stay close to home while Eli undergoes this chemotherapy. We are so thankful to have such great doctors here in Des Moines now.
For our fellow cancer families who care about this sort of thing, we are following a Capizzi protocol that includes two rounds of chemo back to back. High dose Cytarabine (or AraC) was given intrathecally (in the ommaya port in his head) yesterday. Today, he received AraC through the IV and will get it again tomorrow. Thursday he will receive Asparaginase as an intramuscular injection. Then after 5 days, he will repeat that again. By then, Eli’s count should be sufficiently shot and we will have to wait for his counts to improve. After his counts improve and assuming this chemo has successfully treated the leukemia, we will be off to NYC for a bone marrow transplant. That will be a very long process of several months. Thankfully, as we suspected this might be a problem, we have already found a perfect donor match for Eli.
We waited until Sunday night to break the news to Eli since we knew he would worry about it and we didn’t want it to ruin his weekend (which was spent doing all of his favorite things like fishing, ISU hockey, and to top it off, Uncle Adam came up from Missouri to spend the weekend with us!) When we did tell him, he was surprised and disappointed and said, “Chemo again? Well I didn’t think I’d be doing that again.” Then he wiped away a tear and then said, “Ok, bring on the chemo bag, I’ll fight it” and started shadowboxing the air. That was it. Very matter of fact and ready to take on the next challenge.
So here we are. Fighting a new kind of cancer and looking forward to getting back to NED (no evidence of disease) for Neuroblastoma OR Leukemia! Obviously Eli won’t be able to go back to school this year, which is going to be hard on him. We haven’t told Eli about the transplant in NY yet since that will just upset him and give him something else to worry about. We’ll give him one challenge at a time whenever we can.
Eli has enjoyed having a few visitors already. People are welcome to come and visit, but we will probably be restricting visitors as time goes on and as Eli’s counts drop as he will be very succeptible to infection and could easilyi catch something that he wouldn’t be able to fight off. If you would like to visit, just text me (Aaron) and check to see when a good time would be. My cell is 515-231-6181. If you would like to mail a card or anything to Eli, you can simply send it to our home and we will get it to him (it’s so nice getting chemo close to home):
Eli Horn
18385 590th Ave
Nevada, IA 50201
I created a photo album with some highlight photos from over the summer since I did such a terrible job of updating. 🙂 You can see that the boys had a great summer. Check them out here (or scroll to the bottom for the obligatory Animoto.com video – whom we got to see on our last trip to NYC and had a blast doing lunch with the ‘Animoto Guys’!):
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| Summer 2011 |
I will do a better job of updating and letting you all know how he is doing. Thankfully the nausea and side effects haven’t really set in yet. So far, so good! As always, thank you all for the prayers. Just by posting the news on Facebook yesterday, we received over a hundred comments, emails and text messages from friends. We appreciated every single one and take comfort in knowing that Eli’s Army of Prayer Warriors are back in full force!
With Faith, Hope and Love,
Aaron, Lacey, Eli and Isaiah
As promised, the Animoto Vid:
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Wishing I wasn’t reading about Eli’s leukemia. Wishing he wasn’t going to have to endure the transplant and to miss school. Prayers for you all and hoping for more miracles.
Love Ms. Judy
As I said last night on FB I am keeping all of you in my prayers!
Eli you are a couregious and Heroic young man!
In Christ’s love,
Bud and Fran West
I was just thinking about Eli last week and wondering how he was doing. It’s heartwrenching to hear that you have a new battle to face. This has been such a long journey for all of you. Eli is such an amazing little man and a very strong soldier in God’s Army.
God Bless…
Deb Pivonka
I will be praying for Eli and his family every day. Quite a brave little boy you have there. I wish I knew the right thing to say.
I am so sorry to hear this news! You will all be in our thoughts and prayers!
Eli, You are truly a fighter with a great spirit. Praying for you as you fight this battle.
It looks like you and Isaiah had a great summer. How many fish did you catch? Summer always goes by too quickly, doesn’t it?
Lots of thoughts and prayers for your family and Eli.
Angie Anderson, Mom to Wyatt, 3. IV NB 2/2011
We are just hearbroken for Eli and your family. Of course, hearing his response to the news doesn’t surprise me. He is such a fighter! Many prayers and positive thoughts being sent to you all from your tampa family.
Love,
Robyn
Thank you for the update, Aaron. As I was reading your post and the responses posted, I felt overwhelmed initially. But then I was reminded gently by the Lord that HE is the rock that is higher than I. And under HIS wings there is comfort and protections. What a BLESSING to know HIM and be known by HIM. Rest in HIS care. Remind Eli that the Lord is able. Continue to reflect HIS light to all around you.
And of course, you can count on our prayers. (P.S. sent out an update on Eli on our prayer list. Many, MANY believers are lifting you all before HIS throng of grace)
Lots of thought and prayers to Eli and your entire family.
Prayers coming to you Eli and your family from New Hampshire!:)
We are so sorry to hear the latest update. Eli and your family will be in our prayers.
Go get em Eli!
Sharon Becker
God bless you all!!
Every day I have been thanking God that Eli is doing so well, so when LeeAnn told me the news, I cried. I cried again when I read that Eli said, bring it on, I’ll fight it! God is using him in a very powerful way and only eternity will tell the lives that have been changed because of Eli!
Even though I have never met you Eli, I love you and pray for you everyday. Keep up the fight!
You are in my prayers. It saddened me when I saw your post that Eli has leukemia. Our God is able. HIS arm is not short. So glad you are able to go to Blank for the chemo. Eli you are a true warrior. Keep up the fight!
With love and hope for a Forever Healing,
Deanna
Not what we were hoping for, but glad it is getting treated and will pray for Eli in Oklahoma.
Just found out about Eli today. What caught my eye was his name as my son was named Elliott and we sometimes referred to him as Ellie Belle when he was a baby. My son also relapsed with MDS and AML after fighting and beating ALL. He had his transplant at Childrens in Chicago. We are not to far from Iowa, we live in Sandwich IL and when you get off I-88 for my home, it shows Des Moines on the sign going forward. I am sure you know what you are about to go through. If I can however answer any question or be of help, please let me know. I wish you a ton of luck and best wishes.
I had no idea that Eli had MDS. My daughter was dx’d with MDS at the age of 14. Unlike most kids (the few that there are) that get dx’d with this, my daughter never had chemo. We are in the wait and see phase as she has 3.75 blast in her marrow. We know it is coming, and they are looking at transplant. As far as the person from Sandwich- I used to march there I am originally from In. Hope you guys are also doing well.
Right now we live in WA, my husband has been in the Army for 22 years and we have one year left.
Boy, to find other kids with MDS is hard, but I am happy to know there are others I can turn to.
Dang! Really was hoping for the “sorry I haven’t posted so long, Eli is still NED” message!! But I guess if Eli can jump right back into it, so can all the hundreds of folks who cheer him on from afar! We will be praying for you as you head into chemo.
I love this: “Bring on the chemo bag, I’ll fight it.” That’s what I love most about Eli, he’s such a fighter. Eli will be in our thoughts and prayers as he battles this leukemia and prepares for the transplant. You’re amazing Eli!
Eli – we are so proud of all that you and your family have accomplished in this battle and we know that you are a fierce fighter! We are so sorry to hear about the latest diagnosis but we will be battling along side of you with positive thoughts and prayers.
Team Khalil – 21 month old Khalil – MN stageIV high risk neuroblastoma fighter
Kate was just asking about Eli this week, so I chatted with Ms. Brenner and she directed me here. Praying fiercely for you all in this new battle! Kate would love to visit, but we’ve been sick around here. Does Eli have a skype account?
Lifting you all in prayer,
Jenny Jacob and family
Storming heaven with prayers for you Eli! I’m sure you have your fighting gloves on. We’ll join with you, Big Guy!!
Love, ((hugs)), and prayers,
Sheri :o)
Isa. 40:31