Yesterday’s Update

For those not on Facebook or Twitter:

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.

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Intensive Care

This one might be a shocker if you haven’t “liked” Eli on Facebook…

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 or in the past 24 hours. πŸ™‚ 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.” πŸ™‚ 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. πŸ™‚ 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. πŸ™‚ Pictures of our view as well as pictures of Eli can be found at

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. πŸ˜‰ 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. πŸ™‚

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. πŸ™‚

Has this update been long enough for you? πŸ™‚ 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. πŸ™‚

Again, as things progress, the news will likely strike 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. πŸ™‚ Remember, you can always come back here to 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!

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New Blood

Well, Friday was the big day! At 8:26pm, Eli received 2.2 million bone marrow cells from an anonymous donor. Doctor Kobos pushed it very slowly (over about 4 minutes) into Eli’s line and said, “These are the new cells that are going to make you all better, ok?” Eli just nodded as he watched the pink t-cell depleted cells being infused. That was it!

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. πŸ™‚

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!

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Clofarabine Down

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A Belated Merry Christmas

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A Plan

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Still Undecided

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Live from NYC

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Leaving on a jet plane

Just a quick update to let everyone know that Eli had a bone marrow biopsy on Tuesday morning and the results weren’t what we were hoping for. Instead of finding 0 leukemic blasts in his bone marrow, they found 30%. That means the chemo Eli went through 4 weeks ago really didn’t do what we were hoping. Since the leukemic blasts have to be under 18% in order to proceed with a transplant, we are going to head out to NYC today (Friday) and go straight to inpatient so Eli can start a more toxic chemo on Monday to hopefully get those blasts down. While it’s possible to undergo transplant with some blasts (because the transplant chemo and the donor’s cells help kill the leukemia as well), the best case scenario is to go into it in remission.

This will definitely make Eli’s transplant harder as he won’t be going into it as strong as he would have without this extra harsh round of chemo before hand. We wanted to do the chemo in NY so that he could go straight from chemo to transplant without having to worry about him being in good enough shape to transfer from Iowa to NY. As it is, we are checking out this morning from Blank, flying to Newark via Minneapolis, then checking right into inpatient at MSKCC tonight. He will have to wear a mask on both flights as his counts are still zero from the last round of chemo.

So, we packed up last night and today we start our long stint in our second home of Manhattan! Thanks to everyone who gave Eli one last farewell and to everyone that paid him a visit while he was in Des Moines. He loved having the visitors and that will definitely be one thing he misses while he’s in NY. So if anyone is planning their upcoming Christmas or Spring breaks, may I suggest that NYC is a great place to visit? πŸ˜€

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