Eli's Army

Well, we have what they call “a setback”. I woke up this morning to a doctor saying, “We’re not going to extubate him this morning.” Before I opened my eyes I thought, “Please God, let that be the other kid, not Eli.” When I opened my eyes they were looking right at Eli. The doctor (a fellow who I really like a lot) looked at me sympathetically and said, “Sorry, we’re going to have to wait another day. We’ll do it tomorrow. His numbers just didn’t look good enough this morning to proceed. His P02 has been near 100, but today it was 70. We need it to be at least 80 or 90 before we can remove the respirator. Plus, I don’t hear any ‘leaking’ in his trachea, which means his throat has swollen around the tube. If we extubate, his throat could swell shut. So we’ll give him some medicine to reduce the swelling and keep him sedated today with the stronger sedation medicine along with doing suctioning and chest PTs for his P02 to go up. We just want to be really conservative before we take away that machine.”
While it’s a bummer to be waiting yet another day (I can’t believe that doctor’s prediction of Monday back on Thursday is actually coming true), we definitely don’t want to rush the extubation. Not much more to say than that, I just knew a lot of people would want to know what to pray for today!

Alright, well I wanted to post an update even if there isn’t too terribly much to say. I guess it does include a prayer request. Basically we spent today trying to prepare Eli for being taken off of the respirator tomorrow morning. That entailed weaning back the pressure on the respirator to make sure he’s breathing on his own anyway, which he is, and giving him less and less sedative. Unfortunately, by taking away the sedative, you get a grumpy boy that is feeling miserable and uncomfortable. Of course, he tries to take the tubes out, so to add insult to injury, we had to tie his wrists down so he doesn’t pull at his tubes. We can tell he is VERY frustrated about that.
He has never been more awake than when he heard Uncle Dodo’s voice tonight. His eyes popped wide open and stayed that way for a while, although he was fighting sleepiness. Unfortunately, Adam got to witness Eli’s frustration at the worst. He wanted to move because he was uncomfortable, so I was helping him, but he also wanted his hands out of the restraints, which I couldn’t do. Finally he banged his fists on the bed and started to cry real tears (Eli, not Adam). That was hard to watch because it was the first time in nearly a week that I saw an expression on his face that I recognized as being uniquely Eli’s, and it wasn’t a fun one. However, it has to beat the first night when he was looking around slightly scared then finally closed his eyes and a single tear fell out onto his pillow. That one melted me.
I’m just trying to do my job of reassuring him and promising him that the tubes will come out as soon as possible. They want to get him off of the long lasting sedation so when the team comes in tomorrow, he’s not sedated. However, he’s so uncomfortable that they decided to put him on a short lasting sedation medicine. It lasts about 15-20 minutes, so they are just going to push him with that all night long. Then when they are ready to wake him up, they’ll just stop pushing that med and he should be awake within 15 minutes. Not a bad plan. Better than my plan, which was to have Adam read books to him all night because that seemed to put him to sleep beautifully. 🙂
Now he’s battling a fever and high blood pressure. His BP is not too high, but it’s creeping back up to where they decided to look into what meds he was on before because they might need to get him back on them. The fever is a bummer because it’s not really normal after 72 hours to have one, so that means there might be some infection somewhere that needs to be addressed. Tylenol and ice packs are doing the trick for now. Like I said, getting him off the respirator is the next big step. They couldn’t do that today because they heard a little bit of liquid in his lungs still, so they gave him some more medicine to make him shed that excess liquid. As a result, he looks much less puffy and more like the Eli we know (plus about 1,000 tubes). He was so swollen before that if you grabbed his arm or his leg, it was as hard as a rock. Now there is some “squish” to him, so it’s much better.
Well, that’s about it for tonight. A moment of silence for our Cyclones who fell to a fantastic Texas team and an “atta boy” for the Hawks who clinched a stunner against a top Illinois team. They needed a win. I’m sure there were plenty of people in the family lounge wondering why in the world I was watching an Iowa vs. Illinois game of all the ones that were on, but I didn’t care because I had the remote and they didn’t! 🙂 Thanks for all of your prayers, cards, and message board posts. I check in multiple times a day to get my “Message Board Support” fix. Tomorrow should be a big day! I hope you all have a good Lord’s day with some great worship.

Well, a pretty non eventful day except that they cut out the paralytic medicine on Eli, so he’s moving around a lot more. Still sedated, so not really awake or responding, but moving his limbs around. They turned his respirator down to a different setting that is less pressurized, which was the first step. 6 hours later, they turned down the pressure and “peeps” on him to start to slowly weaning him from it. They are trying to pull off fluid so the swelling goes down and he can be less dependent on the respirator. They are thinking optimistically that it could come off as soon as tomorrow, but might not be for a few days. Either way, we’re happy about the idea of getting him out of the PICU.
One comment from a nurse hit me funny. She said, “You know, we hear how rare neuroblastoma is, but we see so much of it that it’s hard to comprehend that. But we know it’s because people come from all over the world to see Dr. LaQuaglia, so we are probably seeing most of the cases that come up.” We have met several neuroblastoma families already. Whether it’s neuroblastoma or leukemia or medulablastoma, when you meet someone else with a bald kid, you immediately have things in common.
I’m not sure what else to tell you. If you guys have any questions, you can certainly e-mail them to me (aaron@hornit.net) or you can post them on the Message Board and I’ll reply to them there to the best of my ability. I don’t know if I’m giving everyone the information they want or if there are questions you’d like answered that I’m not addressing.
We have a great new resource here, Barbara from Candlelighters Childhood Cancer Foundation who made us feel welcome in New York. You know, in Iowa we often think of New Yorkers as being rude and crass, which might still be true in some areas (as it is in Iowa), but in the medical world we’ve been pressed to find any of that. All of the doctors, nurses, Ronald McDonald staff, and even people visiting others in the hospital have been nothing but friendly and polite (as in Iowa). When complete strangers see us carrying around little Isaiah, they always say “God Bless You.” I never heard that in Iowa with Eli when he was little! 🙂
Please keep the prayers coming. You can add safe travels for Adam and Jo tomorrow to the list if you’d like. We’ll be sure to let you all know once we’ve left the PICU or once Eli is talking. That’s sure to be eventful. 🙂

Well, a pretty non eventful day except that they cut out the paralytic medicine on Eli, so he’s moving around a lot more. Still sedated, so not really awake or responding, but moving his limbs around. They turned his respirator down to a different setting that is less pressurized, which was the first step. 6 hours later, they turned down the pressure and “peeps” on him to start to slowly weaning him from it. They are trying to pull off fluid so the swelling goes down and he can be less dependent on the respirator. They are thinking optimistically that it could come off as soon as tomorrow, but might not be for a few days. Either way, we’re happy about the idea of getting him out of the PICU.
I’m not sure what else to tell you. If you guys have any questions, you can certainly e-mail them to me (aaron@hornit.net) or you can post them on the Message Board and I’ll reply to them there to the best of my ability. I don’t know if I’m giving everyone the information they want or if there are questions you’d like answered that I’m not addressing.
We have a great new resource here, Barbara from Candlelighters Childhood Cancer Foundation who made us feel welcome in New York. You know, in Iowa we often think of New Yorkers as being rude and crass, which might still be true in some areas (as it is in Iowa), but in the medical world we’ve been pressed to find any of that. All of the doctors, nurses, Ronald McDonald staff, and even people visiting others in the hospital have been nothing but friendly and polite (as in Iowa). When complete strangers see us carrying around little Isaiah, they always say “God Bless You.” I never heard that in Iowa with Eli when he was little! 🙂
Please keep the prayers coming. You can add safe travels for Adam and Jo tomorrow to the list if you’d like. We’ll be sure to let you all know once we’ve left the PICU or once Eli is talking. That’s sure to be eventful. 🙂

Ok, sorry I’m down to nightly updates, but that’s about the best I can do at this point. Eli is obviously still in the PICU. Things are progressing, but slowly. The head peds doctor said that wasn’t uncommon. They are guessing the earliest the respirator will come out is Saturday. This morning they were predicting Monday, but that’s probably a bit long (we pray). They were able to get his blood pressure to stabilize to normal (that was step 1). So, they took him off the blood pressure meds and they stayed normal. Then they could give him a med that would make him flush out all of his built up fluids (which he has a lot). That couldn’t happen until the blood pressure was normal. So, that was step 2.
Now they need to wean him off the respirator, which they are doing very slowly. They actually have him on a paralytic medicine that paralyzes him because when he wakes up and moves around, he causes problems with the respirator. So, they will start to wean him off of that tomorrow and if he does ok with more breathing on his own, the respirator could possibly come out Saturday. I’m not looking forward to the time he’s awake, not paralyzed from moving around, but still having the respirator because he’ll be so frustrated he can’t talk and frankly he’ll be a bit scared. However, that’s the order it has to go. He has basically been sleeping for 48 hours straight now. They keep moving him around so he won’t develop bed sores, but it’s a bit inevitable.
So, I took some pictures today and went ahead and uploaded them to the Photo Gallery so everyone could get a good idea as to why we still need lots of prayer. However, I will warn you that it could be a bit bothersome for some people (especially kids) as he is extremely swollen and has many tubes coming out of him. That’s why I didn’t put it as the main picture. If you want to see them, you’ll have to go into the Photo Gallery. They all try to prepare you for what you’re going to see, but there is still something about it that hits you when you actually see it.
I thought most of you would appreciate Dr. LaQuaglia’s comment after the consultation that I didn’t get to elaborate on. As he was leaving, I said, “Thank you for all of your hard work today.” He shook his head, pointed up and said “No, don’t thank me. Thank the Lord.” I told him he had thousands of prayers going up for him that day. He said “Thank you.” A very humble physician who is using the talents God gave him to the fullest.
We are totally excited that my awesome brother (Adam, aka Uncle Dodo) and equally awesome sister-in-law (Jo, aka Aunt JoJo) decided yesterday to come visit us in New York this weekend. For the record, my brother wasn’t awesome until I moved out of the house to go to college and we didn’t live together anymore. 🙂 We’re looking forward to some familiar faces for sure!
So, thanks for the prayers. Can’t say that enough. We are so grateful for you all and pray God will bless you for your faithfulness in supporting our family.

Ok, I don’t really want to take too long updating this, but wanted to take some time to thank everyone for all of their prayers yesterday and to make sure nobody has stopped. 😀
We had our consult with Dr. LaQuaglia yesterday at 7:30pm and the FIRST thing he said when he walked in was “He’s fine.” 🙂 He has lots of experience with parents wanting to hear that first thing I’m sure. He explained how he felt like he got everything out. One surprise was that the vein to the right kidney was just as engrossed as the vein to the left, which was a potential problem area. Thankfully, he was able to remove all of the tumor from around both without any damage to the kidneys. Now, sometimes problems can arrive post surgery because of the ways the blood vessels adapt, but hopefully that won’t be the case. He said he had to remove a TON of lymph nodes that were infected and had to keep peeling them off of the pancreas. So, it took over 8.5 hours for the tumor removal because he had to intricately take little millimeter pieces off at a time. Lacey and I were in awe at how someone could stand over a little guy for that long and work so diligently. He warned us that Eli might look VERY different because he would be so swollen and have many tubes coming out of him. He was sure right, but with all of the warning we weren’t too shocked by his appearance.
After we saw him, they put him in an ambulance and took him across the street to New York Presbyterian Hospital to their Pediatrics Intensive Care Unit. Sloan doesn’t specialize in intensive care, and NYPH is one of the best. They have a unit with 20 rooms that can hold 3 kids each that are dedicated to trauma and serious care. The nurses stations are actually IN the rooms and they are almost always right there with your kid. It’s pretty incredible. Once he is more stable, they’ll move him back to Sloan for observation before releasing him to be out patient.
Anyway, the recovery process is under way, but so far not too much progress. One issue is that his blood pressure is very low (opposite of the problems we had before). Also, his urine output is low, even though they are pumping him with fluids. So, they are keeping him on the respirator because even though he could probably breathe on his own, they are worried that his left lung (which was deflated and not back up to par yet) could take on fluid and he’d quickly not be able to breathe. So, they are keeping it in as a backup. They were hoping for faster progress, so we’re praying that tomorrow goes better.
See next post for the rest since I once again hit my 4,000 character limit.

One thing that shocked us is that he was actually coming out of his sedation last night. Enough to open his eyes when he heard our voices and respond to questions by shaking his head yes or no. This told the doctors he needed more sedation. When he starts to wake, he wants to talk SO bad (anyone surprised by this?) and it really frustrates him that he can’t talk with the breathing tube in (which he constantly bites and tries to spit out). It’s hard to watch, so we just comfort him and tell him to rest and to not talk. We also try to explain what happened and answer questions we know he’s dying to ask because he wants to know everything. His biggest concern going into surgery was that he wouldn’t feel anything when he was asleep. I had to promise him a few dozen times. 🙂
When he was getting doped up to go into the OR, he was giggling about how funny daddy looked in his mask and jumpsuit. He kept asking me why I was wearing it (this happened during his first surgery in Iowa City as well). Then when we walked in and saw about 10 people waiting for us he laughed and said, “Well, EVERYONE is wearing masks!” Then he proceeded to launch into 100 questions about what was going on and what things were. They thought it was hysterical and one of the guys said, “Man, your son is hilarious.” Yeah, that’s Eli.
So, at least for a while, keep checking the surgery blog once or twice a day because sometimes I might get an update and only have time to post with my cell phone. Unfortunately, there are no cell phones allowed in the PICU and Isaiah isn’t allowed either. So Lacey and I take turns waiting in the family lounge with Isaiah while the other hangs out in his room (although for breathing reasons, we don’t talk to him because we don’t want him stimulated). That wouldn’t be so bad, but there is no high speed internet anywhere in the NYPH AND my cell phone doesn’t get good reception there. 🙂 Yeah, those that know me are shedding a tear on my behalf right now. Thank you. Once we get moved to the observation room in Sloan we should all be able to be together without any problems. I usually walk Lacey and Isaiah back to the Ronald McDonald House and then make my way back to sleep on the couch in Eli’s room. It’s nice that it’s 1 block down and 5 blocks over from the Ronald McDonald House, so it’s not too far of a walk.
Ok, that’s all I have time for now, I’m sure I’m missing a lot of stuff I’d like to say, but I’m glad I was able to keep posting to the blog because that felt like a really easy way to keep everyone up to speed. Again, we really need prayers for his recovery because there are plenty of things that could go wrong (and plenty of things that aren’t quite yet going right). Your support for our family is amazing and many people comment on that. Thank you so much.

So our first full day in NY is under our belts. This is going to break the 4k character limit and take 2 posts, so don’t forget to move on to the next one for the end.
We met with Dr. Laquaglia this morning around 10am after they took a copious amount of blood from Eli’s central line for all sorts of tests. The Pediatric floor is quite cool with a pretty significant play room. Anyway, Dr. L actually went over Eli’s CT Scans with us and showed us exactly what he was going to try to do. He even showed us how it had changed from the first CT scan. I think my jaw hit the floor. We had never seen the 2 scans side by side before. It’s amazing how much smaller the tumor is now compared to how much of his little body it took up before. Chemo is amazing stuff.
Anyway, the best way to get to the tumor is going to be to go in from the left side between Eli’s ribs. It is also going to involve deflating his lung for more access. The 2 big concerns are getting it out from around his aorta (it’s completely surrounding it) and out from around the artery going to the kidney without causing any damage. He said it is a very real risk that we could lose his left kidney because of this surgery. He said it’s obviously a big priority to try to make that not happen, but the way the vessels are surrounded by the tumor, it’s a very possible outcome.
Speaking of possible outcomes, the hardest one to hear was the one we already knew. He looked at us and said, “I have to tell you, in all seriousness, that this is a very serious and life threatening surgery.” You spend all of your time trying to not think about the possibility of him not making it through surgery, but it’s hard to ignore when the surgeon is outright telling you how serious it is. Then he said, “We do absolutely everything we can, and then the rest is up to…” and he didn’t finish, but pointed upwards. That brought some immediate relief to Lacey and I as we nodded our heads in agreement.
He explained that Eli will look totally different when we see him after surgery. He will be VERY swollen from many fluids, will have a breathing tube and also a chest tube. He’ll have an epidural that can stay in for up to 5 days for the pain and obviously will be very drugged up for pain management. One mom we met tonight in the dining room said that her son slept for 2 days straight after his surgery.
The recovery is a complicated and multi staged process. I don’t even really fully understand it yet. I know that he actually goes across the street (literally) in an ambulance to be in the PICU at Cornell immediately after surgery. Then he goes to an observation unit back at Sloan once he’s out of the immediate danger zone.
As Dr. L left, Lacey said, “Thank you, we have heard nothing but great things about you.” Over his shoulder we heard him comment as he disappeared around the corner, “No, there is only One who is Great.” We both just looked at each other and smiled. He gets it.
Next we met with Dr. Kushner, just to talk about the Neuroblastoma team there and to learn a bit more about the 3F8 antibody treatment they do instead of stem cell transplants. It was a good talk, and he of course got to enjoy Eli at his best. At one point, Dr. K asked Eli what he was going to be when he grew up. Eli crinkled up his eyebrows, turned up the corner of his mouth and said “An adult.” Don’t worry Dr. K, you’re not the only adult that Eli thinks asks dumb questions. 🙂 We were talking about GCSF for stimulating white blood cell growth. I asked if this other kind of medication was like Neupogen (which is the shot that Eli gets when he is neutropenic.) Eli wasn’t even a part of the conversation and he said “Why are you talking about Neupogen?” Dr. K said, “We’re just talking about your medicine.” Eli’s response was “Well I’m not neutropenic, so you guys can stop talking about it.” I think Dr. K got a kick out of the fact that Eli knew the word neutropenic and it’s appropriate context.

So, tomorrow is the big day. They had us scheduled to come in at 6:15am, but then something got bumped and now we need to be there at 7:30am. We’re guessing anywhere from 7-12 hours for the surgery, but it could be more or less. Either way, it’s going to be a full day. We have been told that we’ll be in a large waiting room, getting updates passed along to us from Dr. Laquaglia every 1.5-2 hrs. I know that many of you are going to be constantly lifting Eli and Dr. Laquaglia up to God in prayer, so I thought I’d setup a running update site so that you guys can be updated when we are. http://surgery.elihorn.com is a blog I set up that I can post to by sending txt messages from my cell phone. It’ll be a nice way for me to send short messages for you guys to read without me needing a computer. Also, you can just visit that site whenever you want an update and I won’t fill CarePages with dozens of short posts, which in turn would e-mail all 430 of you for every short message. Hopefully this will satisfy those that can’t wait for me to find the time to post the summary of the surgery on CarePages (which admittedly could take a while, I’m not sure at this point.)
I’ll just continue to say it. We appreciate the prayers of the Bible believing Christ followers SO MUCH because we know from Scripture that it is effective and that God hears His people. God is truly in control and He is the Great Physician. As helpless as it may feel to not be able to do anything by my own power for my son who has cancer, it’s comforting to know that I have such a close and personal relationship with the One that can. Ephesians 1:18-21 says that we that believe can know “his incomparably great power” which is the same power that rose Christ from the dead. I’m confident I can count on that power to be more than sufficient to heal my son.
James 5:15 “And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven.”

New York City? For some reason the Pace Picante commercial came to mind just now. Yeah, New York City. Upper East Side Manhattan to be exact. 405 East 73rd Street to be even MORE exact. Here we are, in the biggest Ronald McDonald House in the world. 84 rooms, 2 outdoor terraces, many kitchens, and the biggest play room you could imagine. All for $35/night.
The staff here is amazing. The guy giving us the tour kept getting stopped by little kids yelling “HEY MIKE!” and he never failed to give them a few seconds of his time. Everyone is that way. The second we walked in the door, Eli had gifts and Isaiah had admirers. I had paperwork to fill out. 🙂
I have to say, driving here was not nearly as intimidating as I thought it would be. However, trying to parallel park an Explorer on a tiny street lined with cars proved to be a bit much. I needed to get the car to the Hertz at LaGuardia, so I didn’t spend much time looking for a spot. Two times around and I finally pulled into the $20/hr parking garage just 1 block down from the Ronald McDonald House. Several trips back and forth later and I had the car totally unloaded. I thought it was totally worth the $20 until I got back from the airport in my taxi and saw about 100 feet of now available parking spots directly in front of the building. 🙂 Oh well, I had bad timing there, but good timing with our arrival. The New York Jets were playing the New York Giants tonight (American football for my international readers) and there was also a New York Yankees game going on and we managed to miss all of that traffic.
After the priority items were taken care of (getting the wireless internet on my laptop going and hooking up the Nintendo Wii to the room’s television 🙂 ), we decided to head out for supper since we’re probably looking at many days of hospital food in the near future. Kelli DeCap, whose son Dawson also has been in Iowa City and New York battling his Neuroblastoma (www.coins4kids.org), gave us some great tips on being here, so we headed out with some confidence and found a great Texas Rotisserie place on 1st Ave where Eli could have his favorite (“Chicken on the Bone”, aka “Drumsticks”).
So the plan is to be at Memorial Sloan Kettering on 68th Street at 8am tomorrow and get registered and meet some doctors. Of course, as you all know, Tuesday is surgery day. Eli will probably be “in patient” in the hospital for 7-10 days after surgery, then will be sent back to the Ronald McDonald House for another week or so to recover “out patient”.
Many of you have asked how to send us mail while we’re in New York, so here’s the address:
Ronald McDonald House
Eli Horn – Room 303
405 E. 73rd Street
New York, NY 10021
We really appreciate your prayers during all of this. This isn’t a little surgery, it’s going to be quite a procedure as the tumor is still sizable and is still wrapped around Eli’s aorta and other blood vessels. That’s why we’re here in New York to utilize the expertise of Dr. Michael Laquaglia.
It makes me smile to imagine God listening to literally thousands of prayers over the next couple of weeks in regards to one little boy’s surgery, recovery, and safe trip back home. And I think it makes Him smile to hear them. What a great God we have that listens to the earnest prayers of His people and takes action. I just read an example of that two days ago in my daily reading in Isaiah 38:1-6.
Anyway, like the rest of the family has been doing for the last hour, I should get some sleep and be well rested for our big day tomorrow. We appreciate you all so much.