Eli's Army

Well, it has been nearly a month now and the dreaded task of writing this post probably shouldn’t be postponed much longer. I’m not even sure exactly where to start, really. There are a lot of things to talk about and say, so I guess I’ll just jump right in.

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!

For those that have been waiting, here is the full one hour long video of Eli’s entire Celebration of Life service. We are hanging in there and appreciate all of the notes/emails/texts of support. I’ll try to do a proper update soon, but I wanted to at least post this video for those that weren’t able to attend, but wanted to see the service. I know that some people already found this via Facebook/Twitter and within 24 hours there were over 200 views already. If you want to send a link to this video to anyone, you can use the Share feature, or just tell them to go to http://funeral.elihorn.com and they’ll be taken to the “About Our Fighter” section, which has been updated and will permanently host this video. Thanks, everyone.

Eli Horn Celebration of Life Service from Eli Horn.

I’m not really ready for a proper update yet, but I at least wanted to give you a few snippets from yesterday for those that weren’t able to attend Eli’s Celebration of Life.  Eventually I hope to have the entire service posted online for people to watch at their convenience. It was an amazing service and I would hate for any of Eli’s Army to miss the opportunity to see it for themselves. I wanted to share the two Animoto videos that we played during the service as well as the tribute speeches that Lacey and I wrote.  Finally, KCCI requested permission to come to the service and take video.  That night, they put together a great news piece that played in Des Moines, Cedar Rapids, and even Omaha, Nebraska.  I’ll link to that video as well.  The amount of support has been nothing short of amazing and I’m sure I’ll touch more on that later.  For now, please enjoy the videos and tributes.

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!

Here are the details for Eli’s Celebration of Life services:

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.

We have confirmed that the visitation will be on Sunday afternoon and the funeral will be on Monday, both at Cornerstone Church in Ames, IA. Specific times to be determined and will be announced sometime tomorrow. We will also have a group of hotel rooms available at a discounted price and will announce tomorrow which Ames hotel that will be.

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

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.

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 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!

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.

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!

Signing up for a free username and password to view these updates won’t subscribe you to getting an email every time we post an update. To get an email, you have to sign up on the right hand side of the page!
Continue reading →

Have you signed up to receive these updates via email yet? Submit your email in the box on the right and then check your inbox for an email with a link to click to confirm your subscription!

Continue reading →