Eli's Army

I think we have seen a side effect of this round of chemo. Extreme boredom. 🙂 Eli is feeling just as good as he has been for the weeks that we were at home, with no problems at all. The only problem is coming up with enough things he likes to do and eat. One fun activity for him has been riding a three wheeled bike around the hallways. He’s getting pretty good at it, although a few people around here might testify that he could use some lessons in driving a straight line. We had another roommate Thursday through Friday, but then we had the room to ourselves Friday night on, which was really nice because we don’t have to worry about waking up or bothering another (possibly more sick) kiddo.
Herky the Hawkeye came by to do a promo video with some kids on our floor for Dance Marathon yesterday. They are going to play it during halftime of one of their games. Anyway, we signed the consent form saying they could show Eli on the video if they got a good shot, but I don’t think there was any good tape of Eli because he refused to go in the room where Herk was. He was happy to watch him through the window. Later on, when Herk was gone, we went to the playroom to use the blow pens. After a few minutes, Herk came back and Eli couldn’t really get away, but Herk kept his distance at Eli’s request. You know, the mascot might not be so intimidating to kids if it wasn’t 7’ 6” tall. They must have a basketball player in there or something, he’s HUGE. Anyway, he saw my Cyclone hat and wasn’t too thrilled, but was very happy to see Eli’s Herk tattoo. I caught one sad moment on video when I asked Eli if he liked the Hawkeyes or the Cyclones better and he said “the Hawkeyes”. I will argue that he was intimidated by a huge, scary mascot, so he had no other choice but to say the Hawkeyes. 🙂 More pics (and the video) can be found at http://photos.hornit.net.

We had high hopes that we would actually get to come home tonight! His last day of chemo was today and it started at 9:30am. It is 2 hours, but then there is 12 hours of hydration afterwards. We thought, hey, we’ll be done by 11:30pm so we can just go home and actually sleep in our own beds (after several nights in the hospital chairs, this was a VERY appealing thought). Our nurses thought that was a good idea, but apparently the higher ups didn’t think so. They wanted to keep him on hydration overnight and release him in the morning. The kid drinks like a fish, I hardly think hydration is a problem, but I’m not going to go AMA (against medical advice) on them. At least we’ll get to head home tomorrow.
We did talk to both of the main surgeons here about Eli’s surgery. They obviously seem very competent and even agreed to both do the surgery together if we’d like (meaning two senior surgeons would be working together during the surgery). However, they both emphasized that if we felt more comfortable with the Neuroblastoma surgeon in New York, they would not be offended and would welcome us back to this hospital for the rest of our treatment with open arms and no hard feelings. We appreciated that. We haven’t made a final decision yet on the surgery, but we’ll let you know when we do.
We talked to them more about getting the stem cells tested and harvested before Round 4. They decided to have us come back this upcoming Friday (the 31st) to have them test the bone marrow to see if this latest round of chemo knocked the neuroblastoma out of the bone marrow so we can harvest it in the beginning of September. We’d REALLY love to be neuroblastoma free after this round. That was a prayer request hint in case you missed it. There are now 320 of you checking this CarePage (which blows us away), so that’s a LOT of prayer and we appreciate every single one.

He’s baaack! Eli is seeing some familiar faces here in Iowa City as he settles back into the life of an inpatient on the 3rd floor of the University of Iowa Hospital. I wondered how he would react to being back in the hospital since he’s been home for a while, but he hasn’t complained once about being here. He’s complained about a lot of things since we arrived, but not about being here. 🙂
Many of you have been asking about his test results. Here’s what we found out. His Bone Scan showed slight improvement over the last time. His MIBG Scan results were “stable”, meaning not much of a change, but the Doctors are actually disagreeing on that because some of them feel it looks improved. Remember, these results come from “Nuclear Medicine” which our Head Oncologist calls “uNclear Medicine”. The CT Scan came back and here are quotes from that report: “Previously seen intra-abdominal neuroblastoma is more than 50% decreased in size. There is also significant decrease in the intrathoracic component of the mass.” So, a decrease in size of over 50% is very good news. However, it also showed some damage to the right kidney. We’re not sure how significant that is, though, because his GFR test came back and says that his kidney function is normal.
The bad news is that there is still cancer in his bone marrow. This means it’s very unlikely that we’ll be able to rescue his stem cells after this round as planned. They want the marrow to be clear of cancer before they collect stem cells because that is what we’re going to be putting back into him and we want it to be neuroblastoma free. There is such a small window of time to collect stem cells that we’re not likely going to be able to do another bone marrow test AND have time to collect it if it’s clear all after Round 3. So, anyway, this is a prayer point. Pray that the neuroblastoma will leave the marrow and that we can collect clean stem cells sometime soon. The more rounds of chemo you do, the less likely you are to be able to extract good stem cells.
So far, so good for Round 3. No real negative side effects yet, so hopefully that continues. We aren’t as fortunate to have a private room this time, so that’s somewhat stressful. However, if you’re going to have a roommate, it’s hard to imagine having a better one than the one we had last night. Simeon is 6 and he and Eli hit it off right away. It was funny to see two little bald kids sitting together watching TV and playing with toys. They also influenced each other’s diets. Simeon ordered Broccoli, so all of a sudden Eli wanted Broccoli. Eli ordered pizza and the next thing you know, Simeon was ordering up pizza. They also both ate a lot, so I’m sure Food Service was wandering how many kids were staying in room 22! Simeon was only here for about 24 hours, so now it’s someone new.
I uploaded a few pictures. One is of Eli’s new favorite mode of transportation now that he feels better (standing on the IV pole and letting dad push him from place to place). He enjoys taking trips up to 8th floor to visit the library as long as he doesn’t have to walk the whole way. He also got attacked by nurses, held down against his will, and tattooed with a Herk tattoo! Ok, that’s an exaggeration, once they told him it would really make his dad mad, he was begging for one. 🙂
So, yes, there is good news, but there is also some discouraging news which hopefully gives you some specific prayer requests for your talks with God.

This will be a quick one, just to let you know what is going on since most of you knew we were heading back to Iowa City this week. Tuesday we left home at 6:15am for our appointment. Eli was in good spirits and had the doctors laughing because he was being his normal inquisitive and humorous self. Some of the doctors hadn’t even heard him speak before because he really wasn’t himself the first time we were there.
They injected him with some radioactive material, then had us come back in an hour for the bone scan. The bone scan consists of Eli holding very still for 3 minutes while they “take a picture” of his bones. He went through 6 of those and did a great job of holding still. Then they injected him with more radioactive material so he’d be ready for his MIBG scan on Thursday (today).
This morning we left at 5:30am and then found out that the anesthesia doctors weren’t going to be ready until 9am, so we sat around for about an hour and a half waiting for show time. Since Eli had several scans to do today, they put him completely out. He had 3 MIBG pictures to have taken that take 20 minutes each. Then he needed a CT scan. Finally, they were going to extract some bone marrow to test it for Neuroblastoma (two big needles in the back to extract marrow from the bone, so we were glad he was out for it).
Eli went under around 9:30am and we got to see him again about 1:30pm. Putting him to sleep was really quite amazing. They injected the medicine into his central line. The guy said he was giving him 3 ccs to start and that it would take a few minutes. Quite literally within 30 seconds, Eli was staring ahead and then put his hands up to his cheeks and his head started to roll back. He started babbling about “three of something”. I figured out later he was saying “Why 3?” because the doctor had said he was putting in 3 ccs. I don’t know if it was appropriate or not, but I was holding him trying to keep his head steady and dying laughing because his babbling was so hilarious. When he woke up, it was a different story. We were told he woke up and yelled “I want my mom and I want my dad!” He was pretty grouchy until he was sure we were leaving. The nurses said it’s a very common side effect of the anesthesia.
The bummer part was that as we were getting ready to leave, they informed us they wanted us back tomorrow for a “72hr” MIBG scan (72 hrs means 72 hours after he was injected. Today was a 48 hr MIGB Scan)! Ugh. It turns out, they want to compare apples to apples with the last MIBG scan. You might recall sedation was a nightmare last time, so he didn’t get his MIBG scan done until 3 days after his radiation injection, not 2 days. So they want a 3 day MIBG scan to compare with his first one. We debated staying in Iowa City for the rest of the afternoon and just spending the night at the Ronald McDonald house, but our appointment for tomorrow wasn’t until noon, so we decided it would be nice to spend the evening and night in our own house. We went ahead and came home.
We’ll be heading back tomorrow for another out patient scan (definitely putting in more time on the road than actually in the hospital, but that’s ok). We don’t know when we’ll get the results, but hopefully soon. If all goes according to plan, we start Round 3 of chemo on August 22nd and it’s another 5 day one. We haven’t done the kind of chemo medicine they have scheduled for Round 3 yet, so we’re not sure how he’ll react.
Thanks for the prayers. Sorry this is so short and to the point, but that’s all I had time for tonight!

As you have probably gathered, my updates are fewer and longer in between when we are at home. I guess I would say that the cliché “no news is good news” applies. Things are going well at home. Entertaining a busy body like Eli, plus getting in all of his meds, feeding his ferocious appetite, and going to twice a week blood count checks are keeping us busy. We are thankful to have had no fevers while we are home so far. Hopefully we can keep it that way!
Eli is officially NOT neutropenic anymore, which is great. His blood counts went through the roof because of those daily neupogen shots (which we’ve been able to stop now). We were also able to escape needing a blood transfusion, which was nice. Equally nice was that his blood pressure really came down, so we were able to cut one dose of his nightly blood pressure meds!
I have so many people asking when we are going to be out of town and what we’ll be doing, so as some of you may have noticed on elihorn.com, I have posted a tentative calendar of Eli’s scheduled treatments. It’s very tentative, but as things change, I keep it up to date. You can see it at http://calendar.elihorn.com. They have moved our Round 3 chemo back 1 week because they didn’t want the stem cell harvest time to fall during Labor Day when there wouldn’t be anyone around to collect them. We are heading in next week to get some scans done. It’s important for us to know if the chemo so far is working at all. If it isn’t, it’s critical we change the plan sooner as opposed to later. So next Tuesday and Thursday we’ll be in Iowa City doing outpatient CT, MIBG, bone, and marrow scans. Round 3 is scheduled to start August 22nd. It’ll be 5 days and then recovery time.
One fun thing this week was that the Make A Wish ladies came to ask Eli what his wish was. At first I did NOT like the idea of Eli getting a wish because I thought Make A Wish was only for terminally ill kids. I wasn’t ready to call his Neuroblastoma terminal, but then I found out that any kids with cancer pretty much automatically qualify. Make A Wish makes a good point that if it was only for terminally ill kids, not many doctors would ever recommend a kid for a wish as it would be like giving up hope. So, anyway, Eli’s wish was, get ready for this, that he wanted to go to a Dinosaur Zoo. 🙂 I’ll be interested to see what the Make A Wish group comes up with for that one. He wanted to see the dinosaurs in cages. Wisely, they asked what his second choice would be if he couldn’t go to a dinosaur zoo and he picked Disney World. We went last November, and I can honestly say he REALLY loved it there, so that would be a good pick too. No idea when we’d be cleared to go, but they said there’s no time limit, so it could be several years from now if that’s what works best.
I had to split this updates into two posts, so see below for the rest.

Thank you for all the prayers about New York. I ended up contacting Oncologists from Chicago, Kansas City, St. Jude’s, Children’s Hospital of Philadelphia, New York, and of course we had more conversations with our good doctors in Iowa City. I had 3 main concerns:
First, that Iowa City was recommending TBI (total body irradiation) with the stem cell transplant. Our doctor at Iowa City said that TBI was a part of the protocol they are following, but agreed that many hospitals are no longer doing TOTAL body irradiation and most do localized radiation, so we could discuss doing localized instead of TBI. That makes stem cell transplant more attractive for sure (although it is still pretty hard on his body due to the massive amounts of chemo).

Second, I was worried that if we did stem cell transplant, we wouldn’t be able to do 3F8 antibody treatment in New York later. In fact, Dr. Kushner in NY confirmed that many patients come AFTER stem cell transplant to make sure they get every bit of the residual disease. From what I understand, 3F8 really works best with minimal remaining disease.
Third, I was concerned with some of the chemo drugs we were using and the dosage because I felt some of it wasn’t as aggressive as it could be. Dr. Loew agreed to sit down and discuss making some changes if we wanted to. They weren’t “dead set” on a protocol and not willing to make any adjustments. So, please keep praying that God will make it clear as to what we should be doing in Iowa City and what we should be doing in New York and when.
As Dr. Morgan from Chicago put it “You’ll ask 6 or 7 different places what they do for Stage IV Neuroblastoma and you’re likely to get 6 or 7 different answers. That tells you that nobody has the right answer. This is a frustratingly difficult disease and if anyone had hit a home run with treating it, we’d all be doing it.” Well said, and she was absolutely right. Knowing that to be true, we will continue to get Eli’s chemo done in Iowa City and evaluate how well he responds before it’s time for a stem cell transplant. Either way, it’s always wise to do a stem cell harvest just in case, so we’ll be doing that in Iowa City for sure.

Thanks to one of our new friends for pointing out the following verse. Hebrews 13:3 “Remember them that are in bonds, as bound with them; and them which suffer adversity, as being yourselves also in the body.” I have really felt that many of you are suffering through this with us as if it was happening to your own family and not someone else’s. That is exactly the calling of this verse in Hebrews and it is really encouraging to see it played out by Christ followers. It never ceases to amaze me how faithful people are to daily pray for Eli and our family. I, in turn, pray that God will bless your faithfulness and enrich your walk with Him.
Remember to keep checking http://photos.hornit.net for updated pictures as I update that much more frequently than the photos here!

Ok, ok, ok, I hear you! I realize it’s been a week and everyone wants to know how things are going at home. My apologies for the lack of updates, I have had a hard time finding the time! No excuses, I know.
The good news is that Eli is doing well. He is VERY happy to be home. Also, he didn’t feel many bad side effects from the second round of chemo, so we were really thankful for that. As most of you gathered from the photos I uploaded, we did indeed get to do some camping in the tent. We didn’t get as far as actually sleeping in it all night, but we did spend a lot of time sitting and playing in it. We even left it up until today so we could spend some time each day in the tent. Jeremy and Melissa brought over some firewood, graham crackers, chocolate bars, and marshmallows so we could have a bonafide camp out. It was a blast! You can see some highlights at http://photos.hornit.net and check out the “Back Home” album. Be sure to check out the huge welcome home sign the Packards hung on our garage door Friday! He still doesn’t appreciate medicine (who does), but otherwise he’s very playful and even ornery again.
So far, we haven’t had any fevers or any reason to go to the hospital, so we are thankful for that. We are also thankful that our very competent McFarland Pediatric team is continuing to monitor and check Eli’s blood counts while we’re home in Ames. If we do end up with a fever sometime, we should be able to go to Mary Greeley in Ames and get things under control without having to drive all the way to Iowa City or Des Moines. Eli gets his blood drawn from his “pipes” twice a week to analyze his Electrolytes and blood count. As of today, he is officially neutropenic, which means little visiting and only with masks. It also means we have to give him a shot every day to help boost his stem cell count. As you can imagine, he is NOT a fan. He thought the pipes meant no more pokes, but this is an unfortunate exception to that rule. 🙁
Eli’s Uncle Adam (who he has called “Uncle Dodo” since he could first talk) wrote Eli a really cool song and recorded for him. I put some pictures to it for a slideshow and uploaded it to my YouTube site, which some of you might have stumbled upon already. If not, you can check it out at http://www.youtube.com/Ska4Him and play the one titled “Letter to Eli”. It’s a really great encouraging song and Eli always loves hearing songs by his Uncle. It’s his number one requested CD when we’re in the car, although it has to compete with the Tunnel song sometimes!
We do have a specific prayer request for you. We are probably going to be making a trip to New York sometime in the next month or two. Memorial Sloan-Kettering Cancer Center is a center that has a team dedicated to Neuroblastoma – http://www.mskcc.org/mskcc/html/2868.cfm. Of the 600 cases of Neuroblastoma diagnosed each year, over 80 of those kids come to Sloan. They have a surgeon that does many Neuroblastoma tumor surgeries each and every week, as opposed to maybe a few each year. We feel it is a pretty clear and easy decision to take Eli to New York when it comes time to have surgery to remove whatever is left of the tumor after chemo treatments. However, Sloan also has an antibody treatment program that they do instead of stem cell transplant. It is considered to be slightly more experimental and they are the only ones that do it, but it’s also something they have been working with for many years. You can learn more about it here if you’re interested: http://www.mskcc.org/mskcc/html/3215.cfm. So we are prayerfully considering whether we want to do the 3F8 antibody treatment instead of the stem cell transplant. It would really help us if you would pray for wisdom and discernment on this issue of how much to have done in Iowa City versus how much to have done in New York.
Thank you all so much for the prayers and for the great cards and gifts. We’ve enjoyed receiving them and love hearing from you guys.

I tried to post a nice update last night, but the site crashed. I was too mad to retype it all up. I have a low tolerance for computer and website glitches. 🙂
I did want to let everyone know that we are packed up and leaving here in about an hour! The second round went really well and so far he is feeling as great as he has been the last several days. The blood in urine turned out negative. It was high in glucose (his blood sugar was 210, Andrea), so they just took the glucose out of his nutrition bag and he went right back to normal.
We had a fun few days of teasing the nurses with Cyclone stuff. I’m sure they will miss us. HOPEFULLY we’ll be home for 2 weeks before having to come back. That’s assuming he doesn’t spike a fever (very likely) or have something else happen that requires our return.
Visitations at our home will be treated the same as here. If you want to visit, we just ask that you let us know so we can schedule people accordingly. One he turns neutropenic, we’ll have very minimal visitors and those will have to wear masks if they come.
Just wanted to let everyone know that we’re heading home. Now you can start praying for Lacey and I’s stress levels since we’re leaving the comfort of the daily visits with doctors, vital checks, and having a nurse 30 seconds away at all times. 🙂 I can’t wait to see the parking guy’s face when we hand him our valet parking ticket stamped 6/26/2007!

Let me confirm what the latest pictures have been hinting at. The last several days have been pretty darn good ones. The nausea has been completely gone, the bowels are working like they should, and the laughter has been abundant. In fact, as you could tell from some of the pictures, the last two days we were free of the IV pole for a few hours, so we got to go OUTSIDE and check out the playground. It was just what Eli needed to start feeling more like his old self. He is a big time park fan. It was apparent that he wasn’t at 100% as his walking was slower than normal and it was hard for him to get up from a sitting position by himself, but as I told Lacey, “I care more about seeing how well he is doing than dwell on the things that still aren’t better like his walking.” Eli does seem to have a lot of pain in his legs, but he still walks on them several times a day, so that’s good. I have a lot more room to upload photos at http://photos.hornit.net, so keep checking the “Hospital Stay” and Playground albums for new photos. I try to upload a few here as well, but the majority of them will be there because I am limited to 50 photos here on CarePages.
Today was a particularly good day, although it probably won’t end as well as it started. Chemo Round 2 started at about 5:30pm. He’ll be on Vincristine for 1 day, Doxorubicin for 2 days, and Cyclophosphamide for 2 days. So today he’s getting all 3 and tomorrow the Vincristine will drop off. As far as side effects go, they all cause hair loss and nausea (the latter is combated with anti-nausea medicine), but some of the more serious side effects we have to watch for include muscle weakness, loss of reflexes, jaw pain, mouth sores, and blood in the urine. However, if all goes well, they plan to have us out of here and back home this weekend. It’s hard to believe it might actually happen! We have promised Eli that the first night we’re back we’ll camp out in the front yard in a tent. For some reason he really wants to do that and it was his idea. So among the more important things, you can also pray for no rain when we come home. 🙂 To explain why it was a good day today, we had music class with several other little kids on the floor, got to see Clifford the Big Red Dog, and even got to see a real dog that got up on Eli’s bed with him. His name was Stuart and was a really sweet Therapy dog for kids.
Ok, sorry for the short post. I got distracted and now it’s 11:30pm. So far so good, but the first urine test shows there might be blood in Eli’s urine already. I’m not sure how that will affect how they give the chemo, that might mean they stretch it out or it could also mean they speed it up. Either way, they are waiting for another final test to see if they need to take any action. We’ll see what tomorrow brings. For now, we’re thankful for today.
Matthew 6:34 – “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Well, the major quest ended yesterday and it appears that Eli’s digestive system is operating rather normally. He has a better appetite and the only time we have a threat of throwing up is when he has to take oral medication. However, he still prefers that over the nose tube. Here are the other highlights:
* They are cutting back on his nourishments through the IV and letting him depend more on eating and drinking like he should be.
* The other good news is that the blood pressure has been so good lately that they have decided to cut back on one of his blood pressure medications.
* This morning they took away his morphine drip to try to wean him off of the pain medication.
* Eli is officially no longer neutropenic! His white blood cell counts are above the danger zone, so visitors no longer have to wear masks (sorry to our visitors yesterday who still had to wear them) as long as they haven’t been sick recently.
That’s about it. We are gearing up for Round Two of chemo. I was wrong in the last post when I said it was 5 days long. Rounds One and Three are 5 days long, but Round Two is only 3 days long as it is different medication with a new set of side effects. They switch things up so the neuroblastoma cells don’t get “accustomed” to the medicine and build up immunity to it. So Round Two starts Tuesday, 7/24 and they are HOPING that we can go home that weekend (28th/29th) barring no further side effect complications. If that is the case, we’ll be home until our Round Three starts, which is tentatively set for August 14th assuming his white blood cell counts are good. They will also do some bone and MIBG scans August 7th through the 9th, but those are outpatient visits. Rather than drive 2.5 hrs each day for them, we might just stay in the Ronald McDonald house each night. We’ve had plenty of people ask us if we are ever going to leave this place (mostly the housekeeping and other staff) and our answer is, “The first chance we get!” I feel like clacking my new bright green Crocs together and saying “There’s no place like home…”
I also launched something late last night that I thought would be fun. We hear from so many people in so many different places that they are praying for Eli. I thought it would be cool to have a visual representation of that, so I created a map that you can add a pushpin to with your city and state. I went ahead and added everyone that sent Eli a card in the mail. Otherwise, if you are reading this update, take a second and add yourself to the map! It’s located on my tech blog at http://techblog.hornit.net and it has instructions there on how to add yourself to the map. So far it is the latest post titled “Personally Using Technology”. I took extra precautions to find a way to do it where you don’t have to “sign up” for some account, so you should be able to just Click the Add button and add your name, city, state and whatever contact information you WANT to provide. Nothing is required except location!
Also, thanks to our friends who brought up my digital camera (along with 20 pounds of mail – mostly cards for Eli) I have been posting better quality pictures. The best ones I try to post here on the CarePage, but don’t forget you can check out our family photo album at http://photos.hornit.net and click on Hospital Stay. Those have the same videos on them that I put on YouTube as well. Thanks for all of your faithful prayers. We continue to cling on to them!

They limit my posts to 4,000 characters, which is never enough, so sometimes I have to split my posts.
Thank you for all of the prayers. We love hearing about them and where they are being lifted up at. I can imagine God smiling over thousands of His people coming together to pray for a little boy that He created. Perhaps even a few people that He hadn’t heard from in a while. This situation has given us a lot to think and communicate with God about and I hope that’s true for some of you as well.
I’ll leave you with the lyrics to “Tunnel”:
I won’t pretend to know what you’re thinking
I can’t begin to know what you’re going through
I won’t deny the pain that you’re feeling
But I’m gonna try and give a little hope to you
Just remember what I’ve told you
There’s so much you’re living for
There’s a light at the end of this tunnel
There’s a light at the end of this tunnel
For you, for you
There’s a light at the end of this tunnel
Shinin’ bright at the end of this tunnel
For you, for you
So keep holdin’ on
You’ve got your disappointments and sorrows
You ought to share the weight of that load with me
Then you will find that the light of tomorrow
Brings a new life for your eyes to see
So remember what I’ve told you
There’s so much you’re living for