Eli's Army

So far so good! We took off this morning in our Hertz Ford Explorer around 7am and pulled into Girard, Ohio at around 11pm (Eastern, 10pm Central). 745 miles down, 399 to go.
For those of you that are feeling sorry for us traveling so many miles with 2 little ones, you have to know these little guys are being amazingly good. Miraculously good maybe? 🙂 We stop about every 3 hours to get out and stretch for 45 minutes or so, then jump back in. Eli has a DVD player for when he gets tired of asking us questions. Ok, yeah, so sometimes I make the suggestion, but he usually thinks it’s a good idea. 🙂 We have had a lot of fun so far. The stress will probably come tomorrow trying to navigate New York City. Oh well, Google Maps has been good to us.
Hopefully we’ll take off in good enough time tomorrow to make it to the Ronald McDonald house to unload everyone and everything but me, and then hope I get to LaGuardia airport to drop off the rental by 5:30pm so I don’t get charged overage. We’re probably looking at another 6 and a half hours of driving left to do, plus 2-3 stops, so if we get started first thing in the morning, we should be ok on time.
I thought I’d post a picture of Eli during his stem cell harvest, so that’s what the main picture is now. Thanks for all of your prayers. Monday is check in where we will be meeting everyone and Tuesday is the big day. I don’t know if you heard, but it’s the International “Pray for Dr. Laquaglia Day” on October 9th. What a coincidence, huh? 🙂 You all are so faithful, thank you so much.

Ok, another fast one. Many of you know, but most of you don’t, that Dr. Laquaglia’s office from New York called and left me a message Wednesday night saying they had a date for Eli. When I called back, their office was closed, so I talked to them Thursday morning and they said “We have surgery scheduled for Eli next Tuesday, the 9th. Please be here first thing Monday morning, the 8th.”
First of all, I thanked God for getting him in so quickly. It’s great timing as his counts are back up and there’s nothing else planned until surgery is over. Second, I panicked on how to get to New York by Monday morning! We (and Lindsay and Suzy and Adam, thank you guys so much) desperately tried to line up a private jet with many of our contacts, but unfortunately Sunday was just too late of notice. Fortunately, those will probably all be options for the way back home after surgery. But for this weekend, we rented a Ford Explorer (one way) and packed it up last night and are getting ready to head due East for New York City.
So, obviously some big prayer requests.
1) Safe travels to New York (and patience, it’s an 18 hour drive WITHOUT all of the required kid stops).
2) Successful surgery to remove the remaining tumor.
3) Quick recovery.
4) Praise that they got more than enough stem cells last Monday for two transplants and a backup.
5) Still pray that the stem cells we got are Neuroblastoma free.
We’ll probably be in New York for at least 2 weeks. Since this computer is the last thing I need to pack up, I’ll sign off and get it put away. Of course I’m taking it with me to New York (anyone that knows me knows that was completely unnecessary to point out) and I know they have high speed internet at the Ronald McDonald house. Hopefully I’ll have more time to update then. Thanks so much for all of your prayers!

Ok, another quick post. I just have a hard time finding the time to do these!
Most of you are wondering about the CT scan and bone marrow biopsy from last week. Unfortunately I did NOT get the birthday present I was wanting. The CT scan showed very minimal decrease since the last scan (meaning the last 2 rounds did not decrease the tumor much, if any) and the bone marrow biopsy came back positive for neuroblastoma. Double whammy. A bit of panic starts to set in because the options are whittling down and the risks of doing a stem cell transplant with someone else’s bone marrow are just so high.
So, they had us come in on Monday for a CD-34 peripheral stem cell harvest. Basically, they take Eli’s blood, run it through a centrifuge machine and take out only the peripheral stem cells. The idea is that hopefully when you select out just those without taking all of the bone marrow, you have much less of a chance of getting neuroblastoma in it. However, the risk was that they usually don’t get enough cells because you waste up to half of what you collect once they finalize the process (this was a bit over my head). Basically, Eli had to be hooked up to a machine that pulled blood from one of his “pipes”, ran it through the machine, then returned it to him in his other “pipe”. One worry was that his pipes would buckle under the pressure of the machine, but thankfully they held up fine.
Eli sat for 5 hours with minimal activity and no sedation. It’s just insane how good he is when he has to be still. The lady operating the machine was quite impressed. Of course, the trade off to him not being sleepy is that he asks 1 million questions. So, if anyone needs a CD-34 harvest done and can find a machine to rent, just bring it over and Eli will do it for you. He knows everything there is to know about them now. 🙂
So the good news with that is that they were hoping for 12 million cells and they got 29 million. That meant we didn’t have to go back on Tuesday and do it again, which was very nice. So, we’ll see how much is left after they finalize the process. We’re praying for enough to do 2 stem cell transplants, plus have a backup just in case something goes wrong with those batches. The HUGE prayer is that they can test these stem cells and get a NEGATIVE result for neuroblastoma. If there is neuroblastoma in these cells, we obviously don’t want to reinfect him with them.
Another big prayer request is in regards to surgery. I’m going to go out on a limb and say today’s bloodwork will show he’s no longer neutropenic. Therefore, he’s ready for surgery. However, New York is having a hard time finding a date for us. They are completely booked and are now looking for overtime slots to create for Eli. I basically told them to get me a date by the end of this week or we might not be coming to NY. We need to get the surgery done so this cancer doesn’t just sit dormant and unattacked, continuing to grow.
Ok, I’m out of time. Sorry these posts are so far apart. Things are just slightly hectic at the Horn household lately. 🙂 Thanks for your continued prayers, cards, and posts. We appreciate you all so much.

Well, everyone is home at last. Ok, we were actually all home Thursday, but it was pretty eventful so I didn’t have the time or energy to post until now. Thursday was the day that Eli got to meet his new baby brother (see slideshow below). Isaiah was born Tuesday afternoon in Ames while Eli and I wrapped up chemo in Iowa City. 8 pounds, 4 oz. and 20” long because I know a lot of people need to know that stuff. 🙂 I thought the anticipation of going home was going to be too much for Eli to handle, but we kept ourselves really busy in the play room and library.
Eli’s last dose of chemo ended Tuesday night at 11:30pm, but he had to be on 24 hours of hydration after it ended. So Wednesday at 11:30pm they unhooked him from the pole and we shot out of there! We got home around 2:30am (thanks for riding along to keep me awake, Jeremy) and crashed into our beds right away. Lacey and Isaiah got home around noon on Thursday. About 12:30pm the novelty had worn off and Eli was bored again. 🙂 Actually, he hasn’t been feeling too hot the last couple of days because that Cisplatin is nasty stuff. We’ve had to repeat some of his medicines because a couple of times he hasn’t been able to keep them down and he throws them all up. It’s usually blood pressure medicine, which is REALLY important, so we have to redose. He’s a real trooper, though.
So we had a roommate the first night (Friday night), but were alone Saturday and Sunday nights. Then we got another roommate on Monday night. I felt bad for them because that was the night Eli started a 24 hour urine collection. It was critical that we got every drop of pee from him, so instead of risking him going in his diaper at night which he tends to do instead of waking up, we had to get up every hour on the hour to ask him for pee. Needless to say, it was a long night for everyone. He did great, though. He actually filled a big glass jug that the pharmacy had sent up, so they had to bring him another one. He gets so much fluid pumped into him, it was no surprise he needed two big jugs for it all! The reason they are doing pee collection is to see if his kidneys are having major problems (his last GFR came back normal). His blood pressure just won’t go down. They started us on a new med this week though, so hopefully it will get back to the normal range. They suspect that removing the mass with surgery will really help since the neuroblastoma is undoubtedly causing the high blood pressure.
Anyway, they moved us on Tuesday morning because they needed more room. We got put back in the bone marrow transplant unit (you know, the ultra clean place with special air filters and all) with our own huge private room. They have their own playroom, which Eli made GOOD use out of, and it was overall really nice and quiet back there. Just a taste of the many weeks we’ll likely spend there in the coming months…
Wednesday, September 26th (my birthday) we have to go back to Iowa City for a CT scan and bone marrow biopsy. They’ll need to put him out for the CT Scan and thankfully that means he’ll be out for the bone marrow biopsy as well. Pray for a small tumor and clean bone marrow! Ok, that’s all for now. Check the photo album for more pictures!

GO CYCLONES! I can’t explain the feeling here. Oh the razzing we got all day Friday from countless nurses and doctors! In fact, I made a bet with one of the nurse practitioners. If the Cyclones won, she had to wear a Cy tattoo on Monday and if the Hawks won, I had to win a Hawkeye tattoo. She was utterly convinced that there was no way she’d be wearing a Cy tattoo on Monday. I think it might actually physically hurt her to wear it. I can’t wait! 🙂
Eli asked me last night, “Dad, when will the good guys actually win?” Well guess what, they won the most important game the entire season! Eli of course wore his number 7 jersey, but was bored with watching football on the TV, so he watched all of 10 minutes of the game. Then he slept or played in the play room the rest of the time. I’m glad most of the people on this side of the floor are gone, I didn’t feel so bad yelling at the TV. Since Eli’s grandparents were here, Lacey and I decided to take a walk on the University of Iowa campus after the game. What a beautiful day to wear cardinal and gold!
Ok, so for the real reason we’re here. Round 4 of chemo started at about 6pm last night. We’ll do 3 days of Etoposide and 5 days of Cisplatin. So far, no major problems. He has definitely lost some of his appetite and seems to be a bit more grumpy than usual, but otherwise definitely not throwing up or suffering from backed up bowels yet. We’re thankful for that. It appears that my birthday present (Sep. 26) is going to be a return visit to Iowa City for a CT Scan and a repeat bone marrow test.
We did do 2 tests yesterday. The first was a hearing test. He actually showed some loss in the upper registers, which is expected. More than likely, he will lose some more after this round of Cisplatin since it’s known to be hard on the hearing. The second test was a GFR test which tests his kidney functions. He actually tested better than last time (which was normal), so that was good news because Cisplatin is also hard on the kidneys.
We need LOTS of prayer that this Cisplatin will knock out the rest of the neuroblastoma in the bone marrow because it’s really important we have clean stem cells to rescue, and enough of them.
We had to share a room with a newborn last night, but I felt more sorry for them than us. Eli was his typical loud self and actually set off her heart monitor once because he yelled and it scared her! Thankfully they were just here for the night and took off this afternoon. This room is much more “dual occupancy friendly”. The curtain basically divides the room in half perfectly. The sleeping comforts seem to decline every visit, however. I expect by Round 5 I’ll be sleeping on the floor. 🙂 It seems to be rather quiet this weekend, so we might get by with another night or two with the room to ourselves, which would be nice.
Thanks for the prayers about New York. We have decided to do the surgery in New York IF they can get us scheduled on a good date. Good would be sometime in the first 2 weeks of October. If they are going to really delay us, we will probably proceed with the surgery in Iowa City. New York promised to call us next week to let us know when they could get us in. We’re praying for an early date. That’s it for now. Thanks for checking in on us!

Eli got to see his friend Simeon from the last visit. Simeon gave him a toy plane which hasn’t left his bed since. Remember the video they were shooting the last time we were here for Dance Marathon? Turns out, Simeon was the star! Check it out below. 2 minutes and 30 seconds into the video, you see Herk coloring with a kid and you can see Lacey and I through the window. That’s where Eli wanted to watch Herk from. 🙂

Ok, another short one. Just to let you all know that we had a slight plan change. We will be going in for Round 4 on Friday, September 14th and will be there until at least Wednesday, September 19th.
I had requested that we use a chemo called Cisplatin instead of Carboplatin for Round 4. Cisplatin is the chemo that Eli had for Round 1. It is harder on the hearing than Carboplatin, but it’s also a bit more effective against the cancer (according to what I’ve read and heard from other doctors). I brought this up weeks ago with our head Oncologist and he said he was fine with that idea. Today they confirmed that they’ll switch him to the 5 day Cisplatin instead of the 3 day Carboplatin, but that they want to delay him until Friday because they feel like if they start on a Wednesday, he will be ready to harvest stem cells over a weekend and it’s hard to schedule that on a weekend since nobody from that area works then. Do you know how ridiculous that sounds to parents of a 3 year old with cancer? “We’re delaying your chemo because we don’t want to schedule a procedure over the weekend.” Last time they delayed us a week because of Labor Day. Oh well, 2 days shouldn’t be the end of the world.
So, after this round, we’ll see if the bone marrow is clear. If it is, we’ll harvest stem cells. The next step will be surgery, probably in early October. If New York can’t schedule us early enough in October, we will be sticking with the surgeons in Iowa City. Hopefully we’ll know about that within the next day or two.
We did enjoy the game even though we lost (again). I added a new album and updated the Back Home album at http://photos.hornit.net. Thanks for the prayers and notes of encouragement on the message board!

This will be my shortest update yet, mostly due to time. I know many people are wanting to know the results of the bone marrow test. We just got them Wednesday night, and it came back positive for tumor. So, that was pretty heart breaking news because we know that every round of chemo decreases our chances of getting good stem cells to harvest. However, there is no point in harvesting stem cells that still have cancer in them, so we’re going to test him again after Round 4 and see if it is gone and if we can harvest then. Round 4 is still scheduled for September 12-14.
We won tickets to the Iowa State / UNI game tomorrow night, so we’ll be there! I think Eli is excited to wear his jersey and see Cy again. Should be a great time. He’s no longer neutropenic, which means no more shots, which makes him a happy boy. We’re planning on going to the Omaha zoo on Sunday. Trying to take advantage of this non neutropenic time right before another round of chemo.
Thanks for the prayers, we really appreciate and need them.

Even though I don’t really have much to report, I thought people might be anxious to hear an update since everyone knew we were in Iowa City for an ad hoc bone marrow test. Unfortunately, those results take 2-3 days, so we won’t know until Tuesday at the earliest thanks to the holiday. Happy Labor Day, by the way. We’re thinking about all of you at THRBC, hope you have a great weekend.
Eli did unbelievably well for his bone marrow test. In the past, Eli has been knocked out for the procedure. This was the first time it was done without general anesthesia. It was also the first time Lacey and I actually saw the procedure done. After watching it, I was kind of wishing I was put under. As our doctor said when he saw the look on Lacey and I’s faces, “It’s pretty barbaric looking, isn’t it?” That was approximately the time when they were pushing and twisting a big needle with a handle on it into his back pelvis bone to extract the marrow as well as a piece of the bone for a biopsy. It looked like something straight out of Dr. Quinn, Medicine woman. Sorry for the abstract point of reference for you international or really young folks. Maybe this would help: http://en.wikipedia.org/wiki/Dr._Quinn_Medicine_Woman
They had given Eli Valium and Morphine and promised he wouldn’t remember a thing. Remember, this is the kid that gets more awake when you give him Ativan and laughs at Chlorohydrate. Sure enough, we quizzed him later and he could recall every detail of the event. Luckily, the morphine and local anesthetic seemed to work because he couldn’t feel too much more than the pressure of the doctor digging into his back.
I am amazed when I stop and think about how many procedures and tests this kid has had in the last 2 and half months and how they just roll of his back and he keeps on being a kid. Nurses and doctors always tell him how brave he is and after we got into the car to head home on Friday and he wanted to know if he could have chicken nuggets for lunch, I realized how right they are. The crazy thing is that whenever we hop in the car to head to Iowa City, we never hear a single complaint. Not one. He knows more medical terms than many kids in elementary school and you should see the eyes of the pharmacist and nurses when he explains to them what medicines he takes and how many squirts of the syringe they all are. He takes all of his medicines in just a few seconds as opposed to the beginning when it took 30 minutes to get an oral med down his throat. I don’t think I’d take it all as well as Eli does.
One nightmare we always have to deal with is getting his meds at a pharmacy. The University of Iowa Hospital pharmacy is horrendously late every time and frankly, doesn’t really need our business. They are so busy it always ends us making us late to come home to get our meds there. However, the big name pharmacies in Ames always give us the run around about being able to make these certain meds and getting the recipes from Iowa City. Finally, I had Lacey call this new pharmacy in Ames called Somerset Pharmacy. The guy was amazing. It’s got a nice small town pharmacy feel and he could handle making ANY of Eli’s meds in no time flat. Extremely nice guy and very helpful. I highly recommend him to anyone in the Ames area. He has our business for as long as we live close.
So, anyway, that’s the post for the day. Be sure to check the Photo Album for more pictures of being back home and our time at the ISU vs. Kent State game!

We are so thankful for all of your prayers, cards, and care packages. We love hearing from you, so keep the e-mails and Message Board posts coming. Your care and support speaks volumes about the design and purpose of God’s church. It’s a hard thing to truly comprehend until you’ve been on the receiving end of countless prayers. Several of you have pointed out that the 335 people checking this CarePage are just a small representation of the number of people that are praying for Eli since he was added to their prayer chain at church. I have a greater appreciation for prayer warriors that can daily remember other people in their trials now that I have met a few hundred of you. I pray that God will bless your life for your faithfulness in spending time in prayer for Eli.