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!