Secondly, thanks to an idea from our good friend Morgan Scheppler, we are creating new Eli’s Army shirts. We decided to do Camo shirts that fit his theme, but we also decided to do Cardinal and Gold shirts that will show Eli’s support of the ISU Cyclones and will be perfect for tailgating! These shirts are “Twitter themed”, so they simply have #elisarmy (which is the hashtag we often use when tweeting about Eli or his Cyclones) and @elihorn (which is Eli’s twitter handle). I will be ordering these shirts soon, so if you are interested in getting one, fill out this form and let me know so I can predict how many to order. I’ll worry about getting the money later, for now I just want to know how many of each color and size I should order. The tailgating shirts will be $10 and the camo ones are $15. The order form has links to pictures where you can see the conceptual designs. Within a few hours of posting that preorder form to Facebook, we had over 28 shirts requested! Including orders placed by a few ISU Cyclone Football players.

Anyway, I just wanted to get those two items out there for everyone to see. I’m sure I’ll eventually post a proper update when I have the energy. For now, thank you so much for the continued prayers. Especially for Isaiah as he works out his new life without his big brother. The other night Isaiah asked Lacey if we were going to get a red box for our dog Harley. She figured out he was talking about Eli’s red casket and was wondering if Harley would have one when she died too. So we do catch glimpses that this stuff is on his mind and we want to make sure that he has no hesitation to talk to us about how he’s feeling. Pretty big stuff for a four year old. Pretty big stuff for a thirty one year old for that matter.

Thanks again!

First of all, since this was such an utter shock to most people, let me mention that there was one missing piece that I hadn’t updated Eli’s site with yet. We were actually out of the ICU when this all happened. Most people that follow on Facebook and Twitter know that, but I realized when going back over his blog that my last post was on 1/13/12 when we were still in the ICU. On Sunday, January 15th, Eli was doing fine with his blood pressure, his urine output, and his oxygen needs were very minimal. So they moved us back across the street to the POU (Pediatric Observation Unit) at Sloan. We spent one night there and by the afternoon on Monday the 14th, they had moved us back to our room on the inpatient side, which we were very happy about! We were back to enjoying Xbox and books and Discovery Channel. Eli’s mucositis was starting to pick up on Monday and Tuesday, so we had to encourage him to spit out that mucus, but everything was actually looking up. His white blood count had actually risen to .2 and they were hopeful that it was indicative of his cells finally starting to engraft. If you’re waiting for the big explanation for what went wrong on Wednesday morning, then this post is going to be a big disappointment. I have no answer for you. Nor do the Doctors.

When I went to bed on Tuesday night (technically Wednesday morning) around 1am or so, I told Eli good night, I kissed his head and told him I loved him and I also told him that Mommy loved him. As usual, he said, “Love you” and I went to sleep on the pull out chair next to his bed. I learned later that he hit a bit of a fever at around 4:30am and so the Doctor came in to check on him and he was just fine. In fact he was shooing her away as he typically did if he was being bothered in the middle of the night. Then around 5:30am, a nurse came in to check on things and found him unresponsive. Eli wasn’t on any constant monitoring like he was at the ICU and POU because we had no reason to believe that anything was going to go wrong (if we would have, he wouldn’t have left the ICU or POU obviously). When I woke up at 5:30am, I noticed the lights were on and there were two nurses in the room. I didn’t think much of it, except thought it was odd that they would turn the lights on and they were talking a bit loudly. Then out of the corner of my groggy eye, I saw one of the nurses shake Eli and I could tell they weren’t getting a reaction from him. That’s the point where I sat up in bed. I didn’t get a chance to say a word. Within a minute, there were nurses all around his bed and Doctors barking out orders at the foot of his bed. I really couldn’t see Eli because of the nurses standing all around, but I knew this wasn’t good. I saw them doing CPR on him and checking for a pulse whenever the Doctor would instruct them to. I essentially sat on my bed with my head down and just started praying, “God, I don’t know what happened, but this just can’t be the end. It’s not going to end like this, right? This doesn’t make sense! Don’t let it be true, please don’t let this be true.” Two nurses kept switching off on doing the chest compressions and one manned the bag. Finally, after another check on the pulse, a Doctor sat down on the bed next to me with a look of utter shock that I’ll never forget. She said, “Mr. Horn, I am so sorry” as I heard another doctor on the other side of the room say “6:21am” and the room emptied of people. I just sat there stunned. I took off my mask as the very surreal realization hit me that I didn’t need it anymore. I didn’t know what to say, the Doctor didn’t know what to say. She told me about their check at 4:30am and then 5:30am and I immediately asked the nurse if Eli had taken his nasal oxygen tube out in the middle of the night (which was something I had worried about and thought maybe it was the cause of everything), but she said that it was in place when she checked on him at 5:30am. Things had been looking good and there was just no explanation. She said they could try to determine an exact cause of death by doing an autopsy, but there was no way we wanted Eli’s body to go through more cuts, just for the off chance that we’d find some specific reason why it happened. It happened because it was his time.

Everyone left me alone with him for a while, so I started playing a hymns album in the room by Jadon Lavik (“Roots Run Deep”) and I just kissed his head and cried. In my family, we tend to turn to hymns as a source of comfort when someone leaves this world. Not too long ago, as my grandmother was slipping away, her kids and grandkids and great-grandkids (including Eli and Isaiah) surrounded her bed to express our love and sing hymns with her. I enjoy modern worship, but nothing beats the impactful and poignant lyrics of an old hymn.

My first call obviously had to be to Lacey and it was a call I had dreaded for the past four and a half years and it was one she dreaded taking. She knew something was wrong when I was calling her at 6:30am since Eli and I always slept in whenever possible, but I don’t think that she truly ever expected to hear what she heard that morning. All I could manage to get out was, “We lost him, Babe.” I managed to call my dad and my brother as well after that and the hospital offered to call someone for me, so I gave them Barbara Zobian’s number (President of Candlelighters NYC, but someone that Eli has called NY Grandma since we met her back in 2007). Barbara was there within minutes of getting the call. We sat there and just stared at Eli in utter disbelief that he was gone. An email apparently went out quickly to the staff on the 9th floor because over the course of the next few hours, many doctors and nurses and Child Life volunteers stopped by to say goodbye. A lot of the Nurse Practitioners were gone that day, but one that Eli (and the rest of us) absolutely loved stopped by. Her name is Ursula and she gave me the biggest hug. She had such a great relationship with Eli and they always loved teasing each other. I will never forget what she did when she left. She leaned over Eli’s bed and said, “Oh Eli, my sweet boy.” Then she kissed his head once for each of the other Nurse Practitioners that were gone that day. “This one is for Yichih. This one is for Latisha. This one is for Linda. This one is for me.” The Nurse Practitioners are really on the front lines with the kids that are going through chemo and 3F8 on the outpatient side and we have known them for over four years. They are such great people. Then the Doctors came by. Ones we had just met due to the transplant like Dr. Boulad and Dr. Steinhertz and ones we have been a vital part of Eli’s treatments from the very beginning like Dr. Kushner and Dr. Modak. Over the past 4 years, I have seen Doctors give bad news to people, but I’ve never seen any of the Doctors look so utterly shocked before. Everyone had always been so hopeful for Eli’s success that they didn’t really think this was going to be the end result. A few ‘cancer moms’ also left their kids for a few minutes to come over and offer hugs and say goodbye to Eli, which of course meant a lot.

I truly don’t know how I would have managed without Barbara being there. Despite the shock she was in over losing someone she considered to be a grandson, she was able to help me make the arrangements I needed to make over the next several hours. The first question the social worker wanted to know was which funeral home we wanted to have them call. Barbara immediately knew of a great funeral director in Queens that would take care of Eli as if he was his own son. So she put me in contact with Paul and I put him in contact with our very long time family friend funeral director in Adel, Iowa, Steve McCalley. Stewart, Barbara’s husband, came over later carrying big shipping boxes that a local moving company donated to us for free and we all spent the next several hours packing up our room. People kept assuring me that we didn’t have to do that, but honestly it was helpful in keeping me busy and it was the best way to know that it would be done right and nothing would be missed. We ended up with 10 huge boxes all packed up and then Child Life took care of FedExing those boxes to our house for us. Eli was in the room with us the entire time and at one point, Child Life offered to take some modeling clay and make hand prints of his hands, which we did and they later sent to me after they had filled the molds with plaster. Finally, Robert from the funeral home in Queens showed up and we left the room while he took Eli to be prepared and sent back to Iowa. Gretchen Witt, who lost her son Liam after a battle with Neuroblastoma, came over to talk as well. She actually helped arrange my flight home, which was a huge burden lifted off of me. I spent the rest of Wednesday with the Zobians and some of the friends we have made over the past four years came over to say goodbye. Some of these guys felt like family after being so close to them for so long. Then I got to really see family as a cousin (by marriage) was in NJ that day and came over to spend time with us that night at the Zobians. I could write pages and pages about the visits I had that night, or the time I spent with Barbara, Stewart, Rich, Carter, Rebecca, and Kieran on Thursday or the flight home or anything else that transpired over the next several days. I’ve been told that it will all be a blur later, but those events seem to be etched into my mind and I can’t imagine forgetting any of it.

So anyway, that should fill you all in a little bit more on what transpired that morning. Obviously I have already posted the videos and tributes from the services and those will always be accessible from the About Our Fighter page, so if you ever want to watch Eli’s Celebration of Life Service again or show it to someone else, that is the place you can always find it. The service was amazing and was everything Lacey and I wanted it to be. Everyone was so supportive and gracious and we are so thankful for having such an amazing network of support. Our church, Eli’s school and community, our family, our friends, Eli’s blog followers, everyone in Eli’s Army has been amazing and we are so thankful.

The question everyone asks when they see me is, “How are you doing?” Typically my answer is, “We’re hanging in there.” I can’t speak for Lacey, I can really only speak for myself, but so far I am still overwhelmed with a feeling of relief for Eli. That might sound very odd, but I am not overcome with a feeling of sadness all of the time. I am truly happy for Eli. Happy that he is reaping the rewards of his hard life and faithfulness through it all. The funeral home director in NY called Barbara and said, “Barbara, I just saw Eli’s body and I can tell he went through SO MUCH in his life.” He did, and he had the scars all over to prove it. But he also did it with a positive fighting attitude, and the faith that his parents, his doctors, and his God were going to take care of him and do everything they could to make him better. And we did. And now he has a perfect body and is being rewarded for all of that hard work. I feel that it was a gift from God to let Eli quietly pass away in his sleep. Not every parent who loses their child to cancer is in that situation, and my heart absolutely breaks for them as I read about some of the very scary endings some of these kids have. To have Eli go to sleep and simply not wake up was a blessing. It was also a blessing to know that his last words to both Lacey and I were “love you.” I am so thankful that we made that a routine in our lives to always tell our boys that we love them when we go to bed or leave them for a period of time.

Lacey says that when she is overcome with sadness over missing Eli, she just thinks, “If I asked Eli if he would leave heaven and come back and go through it some more so he could spend more time with us, he would say no way. He would want to stay right where he is with Jesus.” She’s right of course and so while we might be sad for ourselves because we miss Eli, we can’t be sad for Eli because he is exactly where he is supposed to be. It’s hard for me to convey in a blog the amount of pain that Eli was in over the past few months. The leg pains were excruciating, he hadn’t eaten in months, he was so nauseous all of the time and his stomach hurt from vomiting so much, his legs trembled when he stood up to go to the bathroom or to get weighed and he could barely walk. When a doctor would ask him to rate his pain on a scale of 1-10 with 10 being the worst, his answer was often a 7 or an 8, and not because he was exaggerating. He had a very good gauge for his level of pain and tolerance and he often under exaggerated how much pain he was in because he knew that pain medications had some minor negative consequences as well and at 7 years old, he was electing to deal with a certain amount of pain over dealing with the consequences of too much pain medicine. I can write those things down and you can read them, but it doesn’t really do it justice unless you did what I did and sat at his side and witnessed his pain first hand for weeks and weeks in person. So for the days and weeks following Eli’s death, I just felt so relieved that he wasn’t going through all of that pain anymore. The pain was magnified for me, but for him it was over, and that gives me a lot of peace. As I start to see pictures of when he was so happy and healthy and going to school and having a great time, I start to miss those moments and that’s when the hurt comes flooding in. Tomorrow (February 15th) would have been Eli’s 8th birthday. To say that is going to be a difficult day would be an understatement.

I obviously have more I could write, but this is probably long enough of an update for now. I know I’m pretty spent from just writing it. I’ve followed dozens and dozens of CarePage/CaringBridge sites for kids that end up passing away and every parent handles the blog differently, so I’m not sure how I’ll handle this one. I tended to not update it frequently as it is, so I doubt I’ll be updating it far more frequently, but I still want people to be able to check in and hear from us every once in a while, so we’ll see how frequently I can convince myself to post something. Eli had a huge impact on many people around the world, so as long as those stories are coming in, I want to share them with the rest of you.

Thank yous are being sent out (with an unbelievably massive amount of help from the Schepplers, thank you guys), but quite a few people made a contribution to Eli’s Army memorial with cash and just a first name and no address, so if you don’t get one, please just realize that I might not of known how to send you one! I also have a ton of emails to respond to, so thanks for your patience on that as well. Thanks to everyone for the outpouring of love and support. I might be slow to respond at times, but it’s greatly appreciated. We appreciate the continued prayers very much!

Eli Horn Celebration of Life Service from Eli Horn.

Letter to Eli Memorial Video:

Tunnel Memorial for Eli:

Eli’s Impact video on KCCI: http://www.kcci.com/video/30281770/detail.html

Lacey’s Tribute

Aaron’s Tribute

Also, we have decided that we will remove the username/password requirements for reading this site. You can still sign up to get these updates via email on the right hand side, and you’ll still need a login to leave a comment, but since it’s so easy to leave comments on Facebook, we’ll at least remove the hurdle of needing a login to see any future updates we post here. Eventually I’ll remove the login requirement on previous posts as well.

Thank you all!

Visitation will be on Sunday, January 22nd, 2012.
Family will greet friends
from 2:00 to 5:00 PM
with a prayer service at 5:00 PM at
Cornerstone Church in Ames, IA.

Celebration of Life service will be at 11:00 AM Monday, January 23rd, 2012 at Cornerstone Church in Ames, IA.

Directions to Cornerstone – http://www.cornerstonelife.com/contact/directions

Interment – Walnut Township Cemetery, Waukee, IA

Memorial contributions may be directed to Eli’s Army Fund at First State Bank in Stuart, IA or Bank of the West in Ankeny, IA.

Please feel free to wear cheerful colors. Eli’s favorite color was purple.

The Country Inn & Suites in Ames, IA has reserved a block of rooms which are available for $65/night.  To get this price, just mention the Horn Family rate.  This hotel does have a pool and also a continental breakfast for its guests.  For reservations, call 1-800-596-2375.

Directions to Cornerstone – http://www.cornerstonelife.com/contact/directions

Completely unexpectedly by any of us, Eli met Jesus on Wednesday morning. The nurse checked on him around 5:30am and found him unresponsive and with no pulse. They tried very hard to bring him back, but he had already slipped away to be with God. I will update more later when I can. Thank you to everyone who prayed for our brave fighter for all of these years. We are so thankful for all of you.

Hello from the Intensive Care Unit at NY Presbyterian Hospital in NYC. If that sentence just surprised you, then clearly you haven’t been looking at www.elisarmy.com or www.twitter.com/elihorn in the past 24 hours. Honestly, since this email only goes out once a day around 11pm Central Time, the fastest way for me to communicate the rapid updates and changes and get prayer requests pushed out was from Eli’s Facebook and Twitter accounts. Again, even if you aren’t on Facebook (I believe there might be one or two of you in that boat), you can still see his page as it is a public page. It has lots of pictures posted on it and I use it when we have an emergency prayer request such as we had yesterday.

It all started early Thursday morning when Eli developed a fever. It was the first one in a few weeks. We treated it as usual, but then he struggled with low blood pressure later on in the morning. By around 9:30am, we had no less than 12 doctors and nurses in our room working on Eli to get him breathing better with oxygen, accessed in his foot and arm so the central line could be cultured and eventually removed, and trying to get his blood pressure back up. Despite the large number of people in the room, I wasn’t really comprehending the situation at the time. In fact, I was on a conference call, interviewing someone for our open IT position in Brasil the entire time they were in the room. After I hung up, I got an update from the head doctor (Dr. Kobos) and as she mentioned “Intensive Care Unit across the street at NY Pres”, I realized what kind of situation we were in.

So, by that afternoon, the ambulance was here and we were heading across the street. Dr. Kobos explained that a fever plus low blood pressure indicates several possible problems. The first one is obvious, an infection in the temporary central line. They had immediately changed his antibiotics when he got the fever to try to combat that as an issue. The other possible problem is with his kidneys. However, they have been keeping an eye on them and although they aren’t perfect, they didn’t look too stressed yet either. Finally, the other danger during a transplant is VOD (veno-occlusive disease) in the liver. That is a big deal and something they watch carefully. In fact, during normal labs, they look at Eli’s billirubin number to make sure it isn’t increasing. Before we came to the ICU, they did an ultrasound of his liver. It showed a mixed result. His main artery into the liver was actually a bit bigger, which could indicate inflammation and VOD. However, the veins in his liver were not crushed, which would likely be the case in VOD. His liver is slightly enlarged, but has been for a little while. So it’s a bit of a grey area as Dr. Kobos put it. Anyway, the blood pressure was a serious issue, and so we were off to the ICU (Sloan has an ‘observation unit’, but it’s not a full on ICU, so they refer pediatric ICU patients across the street to NY Presbyterian where we were in 2007 and 2009 for surgery recoveries).

Before we left, I specifically asked Dr. Kobos if we’d be on isolation and everything just like we were at Sloan. She said yes, you’ll have your own room. So when we got to the 6th floor, you can imagine my panic when they wheeled us into one of the normal rooms here where there are three kids in each room. There were two other patients in the room with their families and I immediately said, “This isn’t right.” I actually told the ambulance transport employees not to take Eli off of the stretcher until I had talked to a doctor. A doctor came over and I expressed that this wasn’t going to be acceptable because Eli was on isolation and needed his own room where everyone wore masks, gowns, and gloves. She told me that this was a ‘clean room’ and that none of the patients had any infectious diseases. I looked at her in disbelief as I realized she was serious, I looked at one of the moms of a patient in the room who was watching this all unfold, and then I looked back at the Doctor and I said, “And you screen each and every visitor that walks in here for each patient to make sure they are perfectly healthy?” She had no answer to that of course and said she would ask around for me. I conceded to letting the transport team move Eli to a bed because a nurse wanted to get him on oxygen and get him situated, but I insisted on masks and gloves for everyone. As they were leaving, one of the transport guys leaned over to me and said, “Stick to your guns, dad.” Our nurse was really great and understood my concern. She mentioned to another doctor that they were looking into the room situation and as the doctor was leaving she said, “Well this is all we have, can’t do anything about it.” I looked at the nurse and said, “I think that was completely unnecessary” and I grabbed my cell phone to call Dr. Kobos at MSKCC. I didn’t have her number, but thankfully I have their main line memorized and they patched me right through to her. She immediately wanted to know what was wrong and I said, “They put us in a shared room with two other patients and there is no sense of isolation whatsoever here. They are telling me that there are no single rooms and I refuse to throw out all of this hard work that we have been doing to keep him isolated for this. We have literally cut off all of Eli’s visitors and I haven’t left the 9th floor of Memorial for over two weeks now for fear of bringing in outside germs and we are throwing all of that out the window right now.” She immediately said that she understood and then said the best possible thing she could have said to calm me down. “Mr. Horn, I will fix this. Right now.” The nurse immediately asked me what she said when I hung up and I said, “She said she would fix it.” The drew the curtains and left me alone for a while. I’m pretty sure everyone was too frightened to pull back the curtain. Within 20 minutes, the nurse told me that they had a discharge in a single room and that within an hour it would be cleaned and we’d be wheeled over there. Sure enough, after being in the shared room for about 2 hours, the charge nurse came and said they were ready for us. We moved into a HUGE isolated room where everyone wears masks/gowns/gloves and not only that, but it’s literally hovering over the FDR highway with cars going under us and right along side the East River with a perfect view of the 59th St bridge. The entire south wall is nothing but 12′ tall windows. Dr. Kobos even came by at 9:45pm that night on her way home to check on Eli and make sure everything was sorted out. I think she was pleased to see I had calmed down significantly from our conversation a few hours prior. Pictures of our view as well as pictures of Eli can be found at www.elisarmy.com.

The night went ok with Eli’s blood pressure stabling. They see some liquid on his right lung, so they are working on trying to get him to pee out as much fluid as possible (via a foley of course) by giving him a drug called lasik. It seems to work wonders and I think it would make an amazing practical joke to pull on someone. Slip a little lasik in their coffee at the start of a meeting and watch the hilarity ensue. Not that I would ever do that to anyone. I am SO looking forward to seeing my coworkers faces when I offer them coffee at our next meeting since many of them read Eli’s blog.

The doctors and nurses here have been great so far and it’s pretty amazing to have a private room with a nurse that is dedicated to your kid and rarely leaves the room. She has her own little computer and desk in here, so she’s literally always around for anything. One issue I did have with them was that they didn’t take out Eli’s temporary central line right away. They put in a new central line in Eli’s groin and then verified by xray that it was placed correctly. The next step should have been to yank the potentially infected central line. That’s why they install and use a temp line in the first place as opposed to using his port, the ability to yank it quickly if needed or if suspected as a source of infection (which it was). The resident decided to wait until 4am because he wanted to pull labs from it without sticking Eli again (noble gesture) since they never pull labs from a newly installed central line. I was ok with that plan because I also didn’t want to poke Eli again since he had already been accessed in the foot, the right arm, and attempted in the left arm with no success. However, when I woke up at 9am, I was surprised to see he still had the temp line in. I asked the nurse and she said she didn’t know why, but thought maybe he had been pulled away. The doctors rounded at 10am and did their typical rundown of patient overview (they are very formal over here and do the rundown in the room as opposed to MSKCC who does the rundown outside of the room as to not bother the patients/parents with it I guess). The resident came in while the head doctor was meeting with the nurses and started setting up to remove the temporary central line in Eli’s chest. Before I had a chance to say anything, the head doc asked him why in the world that hadn’t been done already. He stammered around explaining his rationale (without adequately explaining what was going on between 4am when the labs were drawn and the current time of 10am) and she made it very clear to him in no uncertain terms that he had made a mistake and that a central line that is suspect of causing an infection needs to be pulled with top priority. She took the words right out of my mouth. I was happy to get to be there to hear her correct him because it saved me from having to do it.

Has this update been long enough for you? Eli is currently stable with good blood pressures, good o2 (while wearing an oxygen mask – nothing forced, just flowing air), and not too terrible of pain. Pain that he is telling us about anyway, once he wears a mask, his communication is immediately limited to head nodding. It’s the way Eli has always been. When he has a harder time breathing or has to wear a mask, all talking just ceases. The plan is to get some more fluid off of him, see stable blood pressures, and then possibly head back over to MSKCC either Saturday (best case scenario) or Sunday. That’s assuming no more fevers, and everything continues to look good for him. I am particularly keen on getting back over there ASAP because if we are gone for much longer than Saturday, we will probably be asked to vacate our room at MSKCC, which would be a HUGE task. Plus, we’d need to have somewhere to put it all and we’re not quite ready for all of that right at the moment. So if we can get back Saturday or maybe Sunday, we should be able to just go right back into our room without having to move anything. So I’m extra motivated to pray for a speedy recovery for Eli from the ICU.

Again, as things progress, the news will likely strike www.elisarmy.com first and then I’ll post the full aftermath here. If anyone wants to stay ‘up to the minute’, that is the best place to do it. If you’re really passionate about it, you can follow Eli on Twitter and have his quick updates texted to you. Yes, some people do that. Remember, you can always come back here to www.elihorn.com and see his Twitter updates on the right hand side to see if there is any new activity. I have to say, having that Facebook page setup for Eli really proved worthwhile yesterday. As I shared the urgent prayer request, all of the people who check on Eli’s page would share it on their Facebook walls and I think we literally added 200 people to his FB page in a few short hours. Eli’s Prayer Warriors were in FULL force yesterday, and that was quite obvious as I read through hundreds (literally) of comments left last night and today. Many of which were just confirmation that prayers were being lifted up. It was awesome to see and we read and appreciated each and every comment.

We’re still in the ICU, so obviously the prayers need to continue. Thanks for continuing to be with us and hopefully I will have positive news to post next time. As a friend pointed out, Eli has prayer warriors in nearly every time zone around the world, so God is hearing a steady stream of prayers on Eli’s behalf. Thank you all!

Here are a few pictures:

Bone Marrow Transplant

Here is a video of the first few moments of the transplant. I didn’t record the whole thing as it would have been a rather long and mundane clip.

It was interesting to know that the cells were received on January 5th and someone spent 6 hours overnight completing the very manual t-cell depletion process. They counted the cells when that was done and determined that there were still too many t-cells left, so they had to repeat the manual process and do a recount again. That is why the transfusion was pushed back from the original estimate of 2pm to the actual time of after 8pm. I mentioned that they gave Eli 2.2 million cells from the donor. They also frozen another 2.2 million cells for him so that if we ever needed it again for any reason, we have it banked. There’s some comfort in that, although of course we hope we never have to use it.

Now we wait. Every person is different, but they are guessing that Eli’s cells will take 10-15 days to engraft. Once they do, that’s when graph vs. host disease will become our primary concern to watch out for. Procedurally, it was a rather simple event. Symbolically, however, it was like seeing Eli receive new life. Now that I think about it, I don’t even have a video of Eli’s first birth! So Eli’s second birthday is officially January 6th and I have no doubt that he will be hitting us up for presents on that day as well as February 15th every year. At least he should be. He deserves it.

Eli has still been in fairly rough shape this week. He is very weak, not eating a thing, throwing up every day, battling bloody noses since it’s so dry in this hospital, having a sore stomach, and sleeping quite a bit (again, at my encouragement). Honestly, there really are very, very few ‘good moments’ during the day. He talks about being sad, missing family, and questioning why he has to go through this a lot. We’ve had some good talks, but I’m ready for things to start looking up for him and for him to start feeling better. They started IV nutrition tonight now that he is off of chemo. Eli typically gets nauseous with IV nutrition and it can be hard on the liver, but he really needs to get some nutrition in his body to get stronger and he is already on copious amounts of nausea medicine, so we’re going to go for it.

We have heard from so many people from all around the world that assure us that they are still praying for Eli. Thank you all so much. Eli needs them now more than ever as we wait to see if this transplant is going to work!

Yesterday was the last day of Clofarabine and today he gets a chemo called Thiotepa. This one actually has an odd trait of escaping through the skin, so Eli will have to have several baths today and he’s not allowed to have any lotions or bandages on all day so that it doesn’t damage the skin by ‘trapping’ it in. Tomorrow and Wednesday will be the Melphalan, then Eli will have a ‘free day’ and Friday will be his ‘new birthday’ when he receives his bone marrow donor’s cells.

Speaking of the donor cells, the doctors did decide to give Eli T-cell depleted bone marrow. This should make this transplant less toxic for Eli as he’ll need less drugs to try to fight Graft Vs Host Disease. Interestingly, in order to keep Eli’s T-cells from attacking the donor’s marrow, he will be getting a drug called Rabbit ATG. This is a serum produced by rabbits that is used to attack T-cells. The idea is to kill ALL of Eli’s T-cells so that they won’t attack the new marrow. If he has a bad reaction to the Rabbit ATG, they will try a serum produced by horses. First mice with the 3F8 and now rabbits and horses. Sorry PETA, but I for one am thankful for the medical advances that we have come to realize thanks to God’s creation of both plants and animals.

The last week was certainly one to remember. As everyone knows, the Iowa State Cyclone Football Team came to NYC to play in the New Era Pinstripe Bowl at Yankee Stadium in the Bronx. You also know that 9 players from ISU came to the hospital to visit the kids on the 9th floor. At one point we had one of the head transplant doctors say, “Sorry, there’s no way they can visit, it’s just too risky. They can look in the window and wave, but that’s it.” Thankfully other people stepped in behind the scenes and made a visit happen for us. It honestly went as perfectly as we could have hoped. They allowed two players to come in and actually visit with Eli. They of course had to gown up, glove up, and put on a mask, but they were able to come right to his bedside and chat. We saw the list of players and specifically requested the two to come visit Eli.

Brett Bueker (#8) is a player who was around in 2008 when Eli was an honorary team member. He and I are friends on Facebook, so when I saw he was on the list, I sent him a message to tell him that we were excited to see them. He wrote back a great note about how he has still never taken the bracelet we gave him off of his wrist since that day in 2008 and how Eli has been very inspirational to him. Obviously he made the top of our list of players to invite. We also invited Ben Dinkins (#88) because of Twitter. I noticed that before the visit, Ben was tweeting about shaving his head in honor of the kids with cancer and I also noticed that his Twitter profile pic was of him holding a huge fish he had caught. His profile said he was an avid fisherman, so I knew Eli would love to swap fishing stories with him. Both guys were amazing and Eli had such a great time chatting with them. Brett brought an ISU duffle bag full of customized Pinstripe Bowl ISU jerseys and a game ball signed by every single player and Ben pulled out his iPhone and he and Eli shared pictures with each other of their best catches. Tom Farniok and Kirby Van Der Kamp also stopped by and were allowed to wave from the doorway with masks and gowns on. We had posters with both of those guys on them, so they signed them for Eli. He also had everyone sign the really cool Pinstripe Bowl football that the Yankees gave Eli.

As everyone would expect, I made an Animoto.com video of the visit! Enjoy…

Many of you also know that Eli’s story was on CBS as well as ABC. For those of you curious about NBC, they tried, but the hospital discouraged it because it was getting to be too much of a media circus. CBS actually called me one afternoon before the players visited and within 15 minutes we had Skype going between their news room and my iPad and they were able to see Eli and I both that way. Here is that interview (major thanks to Emily Price whom I have met in the past and has done a great job of increasing the number of stories being done about pediatric cancer patients to raise awareness): http://www.kcci.com/video/30087080/detail.html

Then, on the day of the visit, ABC came along and Dave Zawilinski and John Walters did an interview and actually got the visit on video. It was fun for me to get to meet the guy that has been yelling “What a play by Aaron Horne!” every time the new ISU player makes a big play. Here is that video: http://www.myabc5.com/category/190187/myabc5com-video?&clipId=6593091&autostart=true

Thanks to Jamie Pollard and the ISU Athletic Department (Janet, you are the best and we appreciate everything you’ve done for us), I was able to go to the Pinstripe Bowl on Friday with my brother and some friends. Lacey was going to go, but Eli refused to let her leave his side, so they watched the game on ESPN. It was a perfect day for a game and even though the Cyclones lost, it was an awesome experience to see a college football game in Yankee Stadium. We had great seats and it was an experience I’ll never forget. Thanks also to everyone who sent Eli boxes and boxes of posters and ISU stuff. We made use of every single item (including having posters for the players to sign for other kids at the hospital) and received TONS of comments from everyone who saw the room about how much they loved the decorations. THANK YOU for your generosity, especially those Hawkeye fans who were actually able to bring themselves to buy ISU stuff to send to Eli. In fact, we actually got more ISU stuff from Hawkeye fan families than ISU fan families, how crazy is that?

For those of you that did a double take when I mentioned my brother, it’s true, my brother from Jefferson City, MO was able to fly up and visit for a few days thanks to our generous friend Steve. Not only that, but Lacey’s parents (and her sister) were able to visit this last week and celebrate Christmas with us. After all of our visitors, one of the nurses mentioned that technically we weren’t supposed to have ANY visitors once the chemo had started! I pointed out that we didn’t know and no one had told us that and she admitted that they had dropped the ball on explaining the rules to us. Boy am I sure thankful they did! The official rule (which we will start obeying now that we know and now that all of our visitors from out of town are gone) is that there should only be parents in the room. Ideally, only one parent that never goes outside to help reduce the risk of bringing anything from the outside into the room. We will have to continue that until approximately 10-15 days after the transplant (which again, happens this Friday.) All of this is done to protect Eli from any chance of catching something at his most vulnerable state of course. In fact, anyone in the room (including parents) has to wear a mask at all times and the nurses have to wear gowns and gloves as well. I draw the line at sleeping in my mask, but the doctor said I could take it off when I sleep since I’m a few feet away from Eli.

The other thing they forgot to do was “wash down the walls” before we moved rooms. This is a process they have to do for all transplant patients and it involved me taking down ALL of our ISU posters and moving EVERYTHING in our room out to a crib in the hallway and Eli had to have his bed moved to another room for a few hours while they did it. I couldn’t believe I had to move everything again after spending 2 hours moving it here the first time. Thankfully our friend Rich was visiting and was able to help me move everything out.

Please continue to pray (now more than ever) for Eli. We are way beyond the point of no return now. I noticed that one of the FAQ’s in the consent was “What if I decide to discontinue the treatment?” and it said “you should understand that if you withdraw from this treatment plan

after

administration of high doses of chemotherapy, but

before

infusion of the stem cells, you might die because you would be left without enough cells in the marrow to produce the white blood cells, platelets and red cells necessary to sustain you. A transplant of stem cells is absolutely necessary to restore the body’s capacity to make blood.” In Eli’s case, you could substitute the word ‘might’ for ‘would’. As always, thank you for your continued prayers. We need them and appreciate them very much!

I went back and checked to see what I had written last time and realized that we have basically swapped one issue with another. The painful sores are gone, which is great, but they have been replaced by very bad stomach pains and nausea. At first it was just nausea, so we had him on ’round the clock’ nausea meds such as zofran, visteril, and ativan. The downside to those of course is that it makes Eli sleepy, so he slept quite a bit last week. It also didn’t prevent him from throwing up multiple times a day and not eating a single bite of food. After xrays and CT scans, they think that Eli is constipated, so they are giving him a pill twice a day to try to improve that. It seems to have started working as far as making him go to the bathroom, but I can’t say I’ve seen much improvement in his belly pain. He still need dilaudid rescues and hot packs on his stomach quite often. It’s truly a case of ‘if it’s not one thing, it’s another’.

As you may recall, this is how I ended our last update, “Obviously our huge prayer request is that we will see some response from this chemo and that the leukemia blasts would go down significantly to increase the likelihood of a successful transplant.” Well consider that prayer answered. Much to the poorly restrained surprise of most of the Doctors, Eli’s leukemia blasts went down from 14% to 0%. That’s right, no blasts found. This was the best possible scenario for Eli that we didn’t expect would happen. The Doctors were obviously quite pleased because the statistics of a successful transplant are significantly higher when you go into the transplant without evidence of disease. No Neuroblastoma was found either, which of course is great news that we can’t take for granted. So it seems that Eli has a very good response to this drug called Clofarabine. Interestingly, I discovered that Clofarabine was actually discovered and developed, in part, by researchers working at MSKCC. They licensed the rights to a manufacturer, which of course means they get a cut of any sales. Potential conflicts of interest aside, we couldn’t care less because it seems to work well for Eli, which is great. This drug will also be used during his transplant.

Speaking of transplant plans, here is what we are expecting. We are going to officially get started on Wednesday, December 28th (yes, the day before the ISU football players come, but it couldn’t be delayed even one day.) Eli will get 5 days of Clofarabine chemo. The next day, Eli will get a chemo called Thiotepa. The following two days after that, Eli will get a third chemo called Melphalan. This is the high dose chemo regimen aimed at knocking his socks off. All of his cells should be shot and he would be unable to regenerate his own bone marrow. That’s when you bring in the donor’s marrow. So on Friday, January 6th, Eli will get the donor’s bone marrow. He will also get two drugs to try to prevent Graft vs. Host Disease (when the donor’s cells attacks the body because it sees it as foreign) called Tacrolimus and Methotrexate. G-CSF is also given to try to stimulate the stem cells.

There is one decision we are still waiting to hear on and probably won’t know until tomorrow. Originally the plan was to include T-cells in the donor’s bone marrow to help fight off the remaining leukemia. The downside to doing that is that it increases the likelihood of graft vs. host disease and means you need more toxic medicine to try to prevent that. Since Eli is now going in with no visible leukemia, the team needs to decide if they should do the transplant without T-cells instead to help lower the toxicity. They will debate and discuss and let us know soon. I have no idea which way they will go as it seems to be tricky to know which way is the right way. All we can do is pray that God will use whatever way they decide to go for Eli’s recovery and healing.

I won’t bother summarizing the 8+ pages of side effects and risks. As you would expect, they are no fun to read and would make great fodder for a Stephen King book. The whole process takes about 3 months in the hospital and another 3 months right next to the hospital at the Ronald McDonald House. We did get moved into our private room over the weekend, which has been nice. The move wasn’t fun in any way, shape, or form, but I got it done and even decorated the room for the ISU football players to see when they get here. Major thanks to everyone who sent Eli ISU stuff to hang up. We received some amazing posters, pom poms, shirts, stuffed animals, foam fingers, etc. It was especially funny to get them from quite a few HAWKEYE fans (who expressed a bit of pain in making the purchases, but knew it was all worth it for Eli’s happiness.)

For those that have asked, we don’t know who the donor is and might not never know. From what I’ve heard, if you want to be put in contact with the donor, you can call the bone marrow donor registry one year after transplant and request to be put in contact. They in turn will contact the donor and see if he/she wants to be contacted by the recipient. If they agree, the registry gives you the donor’s email address and you can reach out to them.

Eli hasn’t eaten anything for over a week now (well, anything that he has kept down since his one slice of ham yesterday didn’t last more than an hour after the docs made him try a liquid medicine with completely predictable results.) His weight is dropping and the Nutrition department is getting pretty nervous, so I’m expecting them to want to put him on TPN soon. TPN would definitely help with his nutrition, but it will also make him throw up and too much TPN is dangerous for the liver (which is already stressed with iron from all of his blood transfusions and could get worse if graft vs host disease kicks in.) So it’s a hard line to walk. If his stomach wasn’t hurting so much right now, he could eat just fine and build himself back up before the transplant starts, but since everything starts on Wednesday, I think that ship has sailed.

Eli did receive a cool Christmas gift on Christmas Eve. He needed red blood and I noticed that this blood had a pink tag on it, so I asked what it said. It said that it was a donor directed bag, which meant that the blood that our friend Rich gave several days ago had made its way up to Eli. Rich has started putting Eli’s name on the blood and platelets he donates so he knows it will go straight to him. Since Eli has been needing a lot of blood and platelets, it will be neat to know that he’s getting it from a friend.

Christmas was ok. I could tell that Eli was sad to be in the hospital, obviously, but we of course tried to make the most of it. It was great to have Rich stop by as well as Grandpa and Grandma Carter and Aunt Olivia from Iowa. He was never in the mood to video chat with people, but a few called to say Merry Christmas and he would at least squeeze out a ‘Hi’. It didn’t help that he was feeling pretty miserable as well, but we’re obviously doing everything we can to get him feeling better ASAP. Thanks to Nate and Ingrid for the Amazon Kindle Fire tablets for Christmas. Eli and I have been enjoying those as well.

Many of you know that there was a benefit put on at a local BBQ restaurant in Ankeny last week thanks to a lot of work done by Eli’s amazing Kindergarten teacher (Miss Brenner) from last year at Ankeny Christian Academy and supported by our friends the Hendersons and the the whole ACA community. We heard so many great stories about how packed the restaurant was and how they even ran out of pork and beef at one point! I was also told that the restaurant predicted that 90% of their patrons that night were there in support of Eli. How great is that? All of the money raised will go towards our travel expenses including gas and the $245/week for the Ronald McDonald House. Thanks to everyone for the continued support. We are continually amazed by how many people still follow Eli’s journey after all of these years.

I didn’t necessarily intend for this to be such a long update, so kudos to anyone who is still reading at this point. I just wanted to make sure that everyone was up to speed on the answers to prayers as well as the continued prayer requests of figuring out Eli’s stomach pain and obviously a successful transplant. I’m sure I’ll have a post bowl game update later on.

Two weeks? Oops! Sorry about that. It has been a pretty maddening two weeks to be honest. Eli continued to develop more and more sores on his legs, chest, abdomen, arms, etc. These sores became so painful that Eli couldn’t even stand up to go to the bathroom or walk. We kept waiting and waiting for biopsy results, but they kept showing nothing from an infectious disease standpoint. Which pretty much pointed to them being caused by the leukemia.

I think the darkest moment for Lacey and I came around Monday when the leukemia doctor said, “I can’t treat this with chemo because these sores will be an infection point and become very dangerous. There is nothing that I can do for him.” That last sentence is something we have heard doctors tell other families before, but never ours. Speaking for myself, it was probably one of the darkest times so far in this entire journey. It was very much an, “Is this seriously it? Is this really where the end begins?” moment. When the head leukemia doctor at Memorial Sloan Kettering Cancer Center says those 9 simple words, it has an impact. Lacey refused to accept that answer. While residents were telling her that we needed to wait for the sores to go away, she was insisting that it was unacceptable to drag things out and allow Eli to suffer. Dr. Prockop was out and I didn’t think she was coming back until the end of the week, but Lacey pushed until she got to talk to Dr. Prockop. We couldn’t imagine what else besides chemo would help these sores since they were from the leukemia. Dr. Prockop was actually back by Tuesday and took a look at Eli. She was surprised at how much better the sores looked by then (we agreed, they were improved and Eli’s pain was less), so she worked with the leukemia Doctor to concoct a chemo cocktail of Etoposide and Clofarabine (a chemo that will be used during transplant as well). We started that the next day (Wednesday) and he will get both drugs every day for 5 days (meaning Sunday will be the final day). We will repeat bone marrows on Thursday and see where we are at that point. So after a bit of a scare, we have a plan that we are happy with. Ultimately, God allows this to play out according to His will, but we make it no secret to Him what we want that to look like. He knows it anyway, so no point in sugarcoating it for Him.

Thankfully, over the past 3 days, Eli’s sores have almost disappeared and his pain is almost totally gone. He is closer to being back to his normal self and we are seeing more smiles. He still has one pretty painful sore on his arm, but even that pain has diminished greatly in the past 2 days. The major battle now is with feeling tired and sick from the chemo. Today he slept until 2pm, only to awaken for an ultrasound of his arm (which showed absolutely nothing and was very much normal). He is vomitting every night, but thankfully only once or twice in the night and not all day long.

I have to admit, it is SO easy for me to post quick pics on Eli’s Facebook wall that I find myself doing that more and more often. Remember, you can visit the page and not even have a Facebook login to see the pictures! www.elisarmy.com takes you there. I refrained from posting the pictures of his bruised legs and nasty abdomen sores. I know I usually don’t hold those things back, but I didn’t want someone stumbling across his page and being shocked out of their chair. Those updates also get pushed to Eli’s Twitter account, so if you watch that, you’ll see the Facebook activity reflected there as well. We really appreciate and love the comments you’ve been leaving, so thank you for that!

I can’t believe I haven’t mentioned the bowl game yet. Everyone should know by now that our family loves the Iowa State Cyclones. Lacey and I both graduated from there in 2001 and we enjoy going to the home games in Ames for nearly every single sport. You’ll remember that back in 2008 when Gene Chizik was coach, they invited Eli to be an honorary team member and all of the players wore Eli’s Army bracelets on the field. We were cheering LOUDLY in our hospital room in NYC when our ISU Cyclones upset the number 2 OSU Cowboys in Ames. Well when I heard that there was a possibility that our Cyclones might come to the Pinstripe Bowl in the Bronx (in Yankee Stadium), I started praying. Then, I noticed a sign on the 9th floor that said on December 29th, the players from both teams at the Pinstripe Bowl would be coming to visit the kids at the hospital, so I started praying harder! Then when I saw the ISU Football players tweeting that they were officially going to be bowling in the Bronx, I was celebrating! Can you believe that Eli’s favorite team from our hometown of Ames, IA is coming to NYC for a bowl game and coming to OUR HOSPITAL to visit the kids? Needless to say, we’re going to be ready for them. There are at least 13 Cyclone football players on the 2011 Cyclone Football team that were around when Eli was honored in 2008. We even ordered 1,000 more bracelets because we are out of the first 2,300 we ordered and we plan on loading up the new Cyclones with bracelets! Remember, if you’d like a bracelet because you need a replacement, need an additional one, or just want one to give away, just email bracelets@elihorn.com to get instructions on how to obtain one (or more).

Here’s the feature ABC did in 2009 on Eli’s visit with the Cyclones

Thanks to everyone who has been praying, sending care packages and gifts to Eli and Isaiah, and for those that have been asking how they can help our family. We appreciate the support so much. For those in Central Iowa, remember that one of Eli’s teachers at ACA (thanks Ms. Brenner!) has arranged a benefit at Bandana’s BBQ in Ankeny to help pay for our Ronald McDonald House expenses in NYC. You can get more details here: http://www.facebook.com/events/318376461508623/

I also wanted to say a big thank you to the friends and family of our friend Charles Pazdera. Long time followers will remember us talking about one of Eli’s older roommates, Charles, who was fighting Ewing Sarcoma. Charles loved Eli and always sought him out when he was getting treatment or checkups on the 9th floor. Unfortunately, Charles passed away last year, which broke our hearts. Charles’s sister Kristen and mom Nancy organized a gift gathering for Eli and brought in bags and bags of gifts that were donated from all of Charles’s friends and family. There were so many gifts that were absolutely perfect for a 7 year old boy. One of the gifts was an official State Trooper hat/badge/plaque stating that Eli was an honorary State Trooper of Connecticut. What an amazing gesture! I know how much strength and courage it took for those two women to come back to the 9th floor where Charles spent so much time fighting cancer and we are so honored that they would do that for Eli.

I’ll try to update sooner than in 2 weeks. Especially once we have some results and decisions from the bone marrow biopsies next week! Obviously our huge prayer request is that we will see some response from this chemo and that the leukemia blasts would go down significantly to increase the likelihood of a successful transplant.

The deciding factor was supposed to be the bone marrow results from Friday. Unfortunately, those final results won’t be in until Monday, so we won’t have a direction until then. Dr. Prockop had an early look at them and said that she feels that the blasts count has at worst stayed the same and has possibly gotten a little better. I think the leaning is towards going straight to transplant, but the transplant team and the leukemia team will have to agree on that before the decision is final.

One drawback is that Eli has developed two sores. One on his side and one on his leg. They aren’t bed sores, they are deep sores that might be caused by his ANC rising (his ANC is up to .4 now, by the way, which is close to not being considered neutropenic anymore). These sores make it pretty painful for him to walk, which is something we need him to be doing more of, not less of. It is also something Infectious Diseases and the Transplant team really want taken care of before we do a transplant, so it might slow some things down. There has been much back and forth over doing a biopsy of the sore on Eli’s side as it is swollen, but so far they haven’t decided to do that.

The transplant team put Eli on a new antifungal (his chest CT showed a small infection in his right lung that they don’t know what it is, but want it cleared up ASAP). It caused severe pain, high blood pressure, clamminess and was all around pretty scary. So they are now giving it to him with a premed of Benadryl and giving it to him very slowly (over 3 hours instead of 1). That seems to have helped, but that first day brought back memories of doing 3F8 on the other side of the floor!

There was an adventure yesterday in regards to doing a pulmonary function test. The machine they have here wasn’t geared enough towards kids, so Eli had to go across the street to another hospital to have that test done. I warned them in advance that we wouldn’t be taking an ambulance and that we would walk. The ambulance company is out of network and charges people $1500 EACH WAY for a ride across the street. Ask any MSKCC family that has had to do it, it’s insane. So anyway, they walk Lacey and Eli down to the street and there was an ambulance. It was too late for her to back out, so they rode it across the street where they told them they went to the wrong place. So they went to a new place where they told them that the first place was right. So they went back to the first place where they said it wasn’t where they needed to be. So they came back to Sloan, didn’t do the test, and Lacey informed them in no uncertain terms that neither we nor any insurance would be paying for that debacle. They rescheduled for Monday and you can be sure I will not be setting foot in an ambulance even if they send one. We will be walking. The good news is that Eli was on dilaudid for the pain in his side and was in a fantastic mood and enjoyed the rides up and down the block.

Isaiah and I had a ‘first’ the other day. Sai loves to get a donut at the food carts on York Ave. So we stopped at one and there was a sign on the window that said, “Sorry, closed for 10 minutes for prayers” and the guy inside was standing up and kneeling down repeatedly (facing North towards Mecca I’m guessing). We waited about 5 minutes and then he opened the window. I told him Isaiah wanted a donut, but that we were waiting for him to finish. He said, “I stop for child only.” He only charged me $1 for two donuts as the second one was “on the house” and he refused my second dollar. After we walked away, he slid the window shut and resumed his prayers. I love the things you see in NYC sometimes.

Thanks to everyone who has been sending Eli notes and even packages. If you want to mail something to Eli, you can use this address:

Memorial Sloan Kettering Cancer Center
Attn: Elijah Horn – 9th floor pediatrics
1275 York Ave
New York, NY 10065

Eli has continued to have local NY friends visiting, which has been great for morale. Grandpa and Grandma arrive tomorrow, which will also be great for morale. One of Eli’s visitors last week was Katie Linendoll. She is on CNN as a tech advisor and has a tech blog called www.talknerdytome.net. Yes, right up my alley and I enjoyed talking about gadgets with someone else who has the same level of appreciation of them as I do. She is also a volunteer for Candlelighters NYC with Barbara. Anyway, she brought Eli a new iPod Touch (with the cameras) and he IMMEDIATELY started texting and using a walkie talkie app (TalkBox) with people (especially my brother in MO and sister in IA). He was even texting me when I was in the kitchen or bathroom! It’s so great for his reading and writing practice. It’s also nice that he can FaceTime with other iPhone/iPod/iPad users. If you want to iMessage with Eli (meaning you have an iOS device), you can send him an iMessage at: eli@elihorn.com. Don’t forget to tell him who you are. It might take him a while to reply as sometimes he misses the notifications, but hopefully he will. He daily runs the battery down to nothing on that thing. It’s been a ton of fun and very heavily used. Thanks again, Katie!

Ok, that should catch everyone up for now. Hopefully we’ll have a plan of action on Monday that is more defined and I’ll be able to let you know whether we are doing more chemo before the transplant, or just going straight to transplant. Thanks again for all of the prayers, we absolutely appreciate them all!

Oh, also a huge thanks to Eli’s school (Ankeny Christian Academy) and the amazing support we have from the faculty, students, and parents there. One of the teachers has even arranged a benefit at Bandana’s BBQ in Ankeny to help pay for our Ronald McDonald House expenses in NYC. You can get more details here: http://www.facebook.com/events/318376461508623/

Back and forth, back and forth. The decision on what to do next is being bounced around like a ping pong ball between Niwa and Hung at the Olympics. Eli is under the care of both the Leukemia team and the Transplant team here at Sloan. On Monday, Eli had bone marrows (yes, another bone marrow biopsy only one week after having one in Iowa). They wanted to see for themselves what we were dealing with. As expected, the blasts were there and around 15% on the ‘smear test’. The thought was that the FISH would show an even higher count, so we were going to be doing another round of chemo to lower these blasts before heading into transplant. The leukemia doctor yesterday said, “We definitely want to give him another round of chemo before transplant, we just need to decide what to give him.”

Eli’s echo cardiogram of his heart (that we repeated yesterday) showed that his heart function was good, but not perfect. Therefore, they didn’t want to give him too much Doxorubicin if he had already had some in Iowa City (as he did have some years ago at MSKCC). They requested the amounts and types of chemo that Eli had in Iowa City, so I requested those (and received it from the great Nurse Practitioner Mary in Iowa City within an hour). As it turned out, Eli did have Doxorubicin in Iowa City as well, so they weren’t comfortable giving him more of that.

Today, the very same doctor that said Eli was definitely getting another round of chemo said, “Well, it turns out that the FISH doesn’t show any leukemia marked cells. 98% are abnormal, but that might just be the chromosomal translocation and doesn’t indicate any strong leukemia presence beyond what was seen in the smear test. I don’t necessarily think he needs more chemo as it might not do that much.” So that basically means that his blasts might not be much higher than 15% and Dr. Prockop had said that they could still do a transplant if the blasts were under 18%. The combination of the chemo during transplant as well as the T cells from the donor can help fight those AML blasts. So now the decision is back in Dr. Prockop’s court (the Transplant team) to say whether she wants to do another round of chemo to lower that 15% number or if it’s better for Eli to go into the transplant stronger. Last week she told me she’d rather he go in stronger with some leukemia still showing, but we’ll see what she says this week. She’s off today and tomorrow, so we won’t find out until Friday what the decision is. We, of course, are perfectly fine with waiting if that means we’ll make the best and most informed decision for Eli. On Tuesday, Eli will have his most dreaded scan, the MIBG scan, just to make sure the Neuroblastoma is still out of the picture (we wouldn’t want to have to involve yet a third team, although Dr. Kushner did seek Eli out between procedures so he could say hi). That is the test that Eli has to lie perfectly still for without sedation for about an hour. It also happens to be the best scan for catching Neuroblastoma activity, so we’ll do that next week and pray for negative results.

This Monday, they started Eli on nightly GCSF shots in the leg to try to stimulate white blood cells to get him out of being neutropenic. Of course my first question was whether that would stimulate the leukemia as well, but they said there is no strong evidence that it does and people usually fall in one of two camps “It doesn’t” and “It might”. Since Eli’s counts have been so low for so long, putting him at many risks of infection, they decided it was worth doing the GCSF to try to get his counts up. After two shots it hasn’t done anything so far, but hopefully we’ll start to see a rise soon.

Meanwhile, we are making the most of our situation and trying to stay entertained in the hospital. Bingo has been a popular event (everyone wins a prize) as well as an online gamed called Lego Universe, which we sadly discovered is being discontinued at the end of this year as they didn’t have enough demand for the $10/month subscription price! Eli has been enjoying visits from friends, visits from the school teacher Anne Marie (who has been thoroughly impressed with Eli’s evaluation work thus far), and even a visit this afternoon from a music therapist who just so happened to be from Ankeny, Iowa originally. Tomorrow is Thanksgiving, obviously, and the hospital is having a big Thanksgiving feast in the big playroom on the 9th floor of the hospital from 12-2pm. They are allowing us to invite guests, so we were thrilled when NY Grandma Barbara and Stewart said they’d join us for lunch! Barbara has, to no one’s surprise, been a life saver for Eli as she has made him Shells n Cheese (that he loves) and spaghetti for when nothing on the hospital menu sounds good. Barbara takes extra precautions to make it very special for Eli since he is neutropenic, which means she only uses freshly opened ingredients, uses filtered water, and wears gloves while preparing the food. She really does go above and beyond. We’ve also enjoyed the company of Stewart and their son James while we’ve been here. We’ve also seen Shirley, Chloe, Steve and tomorrow we get to see Rich after a very long time of not seeing him! In addition, we’ve been able to catch up with some of our favorite nurses from MSKCC (although if you are one of those nurses reading this and haven’t stopped over yet, you’d better come say hi!) Eli is always excited about having visitors.

I have continued to post pictures here: http://www.elisarmy.com Thanks to everyone who has been leaving notes of encouragement. We read them all!

Yesterday morning we were discharged from Blank Children’s Hospital in Des Moines, Iowa and last night we went to bed on the 9th floor of Memorial Sloan Kettering Cancer Center in New York City. It was a long day of travel, but thankfully everything went smoothly. In fact, I would say it went better than smoothly. It started with TSA not questioning our bag full of medical samples, slides, and materials. We were well prepared with official letters from Dr. Rokes, but didn’t need them at all.

Then on the flight from Minneapolis to Newark, we sat with a guy who lives in San Francisco that was coming home to NY for a friend’s wedding. Eli was wearing a mask on the flights obviously as he has no counts, so that fired up some conversation. After we deplaned, Mike said, “You know, my parents are picking me up and I’d hate for you guys to have to get on a bus, can we give you a ride to the hospital?” So rather than buying a bus ticket, exposing Eli to even more random people in a cramped space, then paying a taxi to take us to MSKCC, we jumped into Mike’s parents’ car and were shuttled directly to the front door of MSKCC. I can’t really explain it, but there is almost nothing that entertains me more than listening to a true New York family conversing. It’s a completely different style of communication than we are used to in the Midwest. Very fast paced, very multi faceted, very opinionated and a huge emphasis put on the details of the stories being told. I could listen for hours. It was so amazing to not have to worry about transfers and tickets. I’m very thankful that God put Mike in the seat next to us today on that flight!

So we hauled our luggage to Urgent Care to be admitted and then transferred to the 9th floor. Of course we spent the entire time watching our Iowa State Cyclones on ESPN against Oklahoma State. I’m pretty sure I don’t have to tell you how excited we were to see yet another huge upset by our Cyclones. We literally made the Doctors and Nurses wait at certain points so we could see the play before we answered their question. It was an amazing win and we are so happy for all of our friends in Ames. I can’t believe I would have been at Jack Trice Stadium last night if we wouldn’t have been sent off to NYC yesterday, but we do have our priorities.

Poor Eli wasn’t really hungry until all of the options were exhausted. They wouldn’t let us order outside food (like Chinese) because he is neutropenic, so the nurse offered him a microwaveable macaroni and cheese dinner. Later I found out that it was her personal meal that she had brought from home! It didn’t go to waste, he ate every single noodle.

We don’t really have anything planned for this weekend, so we will just be hanging out and watching counts. MSKCC will repeat bone marrow tests on Monday and then Eli will start chemo. We don’t know the exact concoction that it will be as we haven’t had any discussions with the leukemia doctor yet, but it will likely be something more toxic than what we tried 4 weeks ago. Then the idea is to go right into transplant after that.

For those in NYC interested in visiting us and keeping us company this weekend, we are in Room 931A (we were in this exact room years ago) and would love to see you! Thanks to everyone for all of the prayers. We appreciate them so much. The Facebook messages on Eli’s page have been awesome as well.