Eli's Army

I’m going to title this update “Much Ado about Poo”. 🙂 Mainly because that’s what the last 3 days have been about. Trying to get Eli’s bowels moving again and to get him to go to the bathroom has been a major goal. Unfortunately, we haven’t been successful in the quest, but there is some improvement. They had Eli on a no food or drink order, but yesterday they were happy with the bowel sounds in his stomach. They had stopped altogether due to chemo, but the surgeons were worried it might be a blockage. Thankfully the sounds came back, so they don’t think that’s the case. Plus, the NG tube pulled all the bile out of Eli’s stomach and then it was just clear fluids, which was normal. That told them the intestines weren’t backing up anymore. So the good news yesterday was that the tube came out! It was good timing because this new tube was thicker and was starting to really irritate his nose. They also put him on a “clear liquids” diet and he could drink chicken and beef broth along with his coveted juice. They had some x-rays done today and were happy with what they saw. They’ve also been hearing many more bowel sounds the last two days. So as of a few minutes ago, the “no eating” ban was lifted! Eli had Mac N Cheese at his bed within minutes.
Other good news is that Eli has been more of himself the last 2 days. We’ve taken trips to the playroom and the doctors and nurses have seen plenty of smiles and heard many laughs. I actually uploaded a few videos that I took with my cell phone the last 2 days to YouTube (http://www.youtube.com/Ska4Him). Two of them are of Eli playing in the playroom and the other one is Eli singing the song of his favorite song “Tunnel” by Third Day. You can hear the entire official song by going http://www.thirdday.com/new/radio_wya_nav.htm and click Play (it’s the first song on the playlist).
You may recall he had a bacterial infection in his line. Fortunately the antibiotics appear to be doing their thing. Yesterday’s blood culture came up negative for growth, but they don’t consider it truly gone until it’s showing negative 3 days later still, so Thurs. will tell whether it’s really gone. He also has had low potassium levels, so he is on electrolytes. He is also still neutropenic, although daily getting closer and closer to “out of the danger zone” as his blood cell counts continue to rise. So visitors still have to wear masks, but that doesn’t seem to phase him.
This update could also be called “Much Ado about the Doo”. The hair loss has officially begun. He sheds on his bed like crazy. So today we borrowed some clippers and went down and buzzed it off (see new picture). That should make it cleaner and a little less traumatic when it all falls out completely. The funny thing is that they say when it grows back, it might not be what it was before. It could be curly and blonde. There is a couple on our floor with a little guy who is recovering from chemo. His mom is Asian and his father is a red head. He had dark eyes and black hair like his mom until chemo. Once it fell out and started growing back, they were surprised to see it was coming back red. It looks like they bleached it or something, but it’s just growing back different. Eli’s first comment was “I can’t do this anymore” as he tried to run his fingers through his hair. 🙂
I officially give up on trying to figure out when we’re coming home. This morning the head Oncologist said, “You realize that by the time we’re ready to send you home, it’s going to be time for Round 2 of chemo, right?” He’s right of course. Next Tuesday (7/24) starts Round Two of chemo, which is 5 days long, and if it’s anything like last time, we’ll be here for a while afterwards dealing with the affects of the chemo.

Is anyone surprised when I say that Lacey’s intuition won out over my suspicion about going home? We had some additional complications this weekend, so there is still no talk of us coming home going on around here.
Eli was struggling with throwing up bile. The bile indicated a backup of his intestines. We had some x-rays done, but we don’t know if there is a blockage or a twist or if the tumor has shifted and is pushing somewhere that it wasn’t before. However, the x-rays did confirm that his colon was distended. So they had to put a new kind of NG tube down his nose. The tube we had in was only good for administering medicine to his stomach. This new one is a bit thicker and allows him to be hooked up to a vacuum that sucks the contents out of his stomach. It can also be used to administer medicine and obviously the vacuum is shut off for 30 minutes after new medicine is given so it isn’t just sucked right back out. It’s certainly not fun (nor was it fun putting it in), but so far it has helped reduce the vomiting.

Thankfully, the x-rays from this morning told the surgeons they didn’t need to get in and do surgery to try to solve the problem at this point, his colon was looking better and they can hear more movement than they were hearing yesterday. He is on strict orders not to eat or drink anything until he has a stool. You should hear this kid try to negotiate and sweet talk the nurses into “one little sip of water, please?” He’s quite convincing, but we are hard ones to crack!
Eli has also been struggling with fevers, but Tylenol has been doing the trick quite nicely for those. If we were at home and he hit 101, it would be immediate hospitalization. The nurses and doctors have assured us that it is all but guaranteed to happen when we’re at home. Hopefully we won’t have to come to Iowa City, we should be able to go to Mary Greeley or Blank, because they don’t want him having a fever untreated for a 2.5 hr drive to Iowa City from Ames. His blood counts have reached critical levels a few times requiring blood transfusions (shameless plug for everyone to donate blood next time you hear about a drive) and this morning he had a platelet transfusion for his low platelet levels. One of Eli’s central line tubes showed bacterial infection, which is pretty common, so they have antibiotics going in to try to correct that problem.
Some good news is that his white blood cell count rose a bit today from 500 to 800. It’s not much, anything below 1,000 is neutropenic, but hopefully those will keep increasing at a fast rate. He actually takes medicine that helps those grow faster, so it looks like that is working.
We’re up to 198 people signed up for Eli’s CarePage. I feel like there should be some sort of prize for number 200. 🙂 We really appreciate the prayers and enjoy reading the Message Board every day. I know the Message Board is encouraging to others checking in as well. We’ve had such great support from our employers, co-workers, families and friends. We’ve even had great support from complete strangers! Most of all we’ve had great hope in the One that created all things, including Eli. Psalm 139:13 “For you created my inmost being; you knit me together in my mother’s womb.” It’s a very scary time, and all of you parents will empathize that seeing your kid in pain is one of the worst feelings ever, but God has a holy purpose and plan. If you don’t believe that, we should talk sometime. 🙂

This is just a very short FYI for anyone that is planning on visiting. One doctor this morning confirmed that we won’t be talking about going home for another 3-4 days. Eli still isn’t eating really well on his own and we haven’t figured out the magic pain/nausea control combination yet.
First, please make sure we know when you’re coming and how many people are going to be visiting. We want to make sure that we don’t have a conflict with something scheduled or have too many people showing up at the same time.
Second, as of this morning all of Eli’s visitors will have to wear a mask (we have a box of them here) because he https://buycbdproducts.com officially neutropenic. His white blood cells are very low and he’s very susceptible to picking up any illness, even from people that don’t know they might be sick.
Finally, touching should really be avoided. We’ll have hand sanitizer, but the less Eli gets touched, the better. We have to be very bacteria adverse!
We’re definitely not trying to keep anyone away, we just wanted https://buycbdproducts.com pass along the “rules” in case anyone was wanting to say hi this weekend and didn’t want to be surprised with a mask and hand sanitizer when they walked through the door. You can find out how to get here by checking out the Visitor Information under Contact Info. Thanks!

Ok, for the most commonly asked question: “When are you coming home?” The answer, unfortunately, is still “We don’t know.” My optimism says maybe this weekend and Lacey’s intuition says we have a ways to go yet before they’ll be satisfied with his progress. The good news is that the blood pressure is finally under control. We haven’t received any training on the massive amounts of medicine we’ll have to give Eli at home and nobody has been throwing around the “D word” (Discharge) yet.
The good thing is that Eli is starting to be awake more, has started eating a little bit, and has shown more interest in getting out and going to the play room when they have activities. We are thankful for that because I think we’ve all seen every Disney movie ever made now and long for anything else to do besides watch movies. We are well known in the Patient Library on 8th floor. 🙂
Several people have asked about our stem cell transplant meeting yesterday. Many people just want to know what it’s all about. I’ll try to explain our 90 minute meeting in a paragraph or two. If you want to know even more, the term to Google is “Autologous Stem Cell Transplant”. Autologous is a key word, it basically means they will use Eli’s own stem cells that they will recover earlier in the process. Here’s a synopsis. We have 5 rounds of chemo to do (one week each and Round 1 is done). Between Rounds 3 and 4, they are going to do a “stem cell rescue”. They have a window of a day or two where Eli’s body will be recovering from chemo and will be making more stem cells. They will hook a machine up to his Central Line and pull blood out of his system, run it through a machine that spins the blood and takes out the good stem cells, then pumps the blood back into his system via the Central Line. They take these stem cells and freeze them for use later during the stem cell transplants (yes, plural, they have recently found that doing tandem transplants increases the chance of survival by 20%). After round 5 of chemo, they will prepare for the stem cell transplant. Hopefully the stem cells we pull after round 3 are neuroblastoma free!
The stem cell transplant will include major, major doses of chemotherapy. More than Eli experienced in all 5 earlier rounds combined. They also radiate his body from head to toe. This destroys all the blood cells, to the point where he can’t even create new ones. That is when they put his good stem cells back in. This is the real effort to absolutely rid his body of any remaining neuroblastoma cells. And yes, they do it twice because it’s even more effective, albeit extremely hard on his little body. Despite all of this, 45-55% of the time, the neuroblastoma cells return. That is a bad prognosis because that means they can withstand an insanely potent chemo and radiation treatment.
We saw the area where the bone marrow and stem cell transplant patients stay. Every room is HEPA filtered, the doors expel air when they are opened as opposed to drawing air into the room, and access is gained through a double set of sliding doors. Sorry, no visitors. The kids’ immune systems are essentially nonexistent at this point! This process is probably going to happen sometime around November/December if all goes according to plan. Eli will be here for 4-6 weeks for the treatment, and then they move him to the Ronald McDonald house in Iowa City for around 2-3 weeks because they need him close by for many follow up tests and to keep a watchful eye on him. Obviously all the time lines depend on how he does with the side effects of the chemo. Unfortunately we’ve been assured it will be very painful, but they will also do everything they can to make him comfortable with pain killers. It goes against every fiber of our beings as parents to agree to something that will be so painful, but we have been assured by the doctors that the alternative is to not do it and let the neuroblastoma win. Give you enough to pray about? 🙂

Since I had mentioned in an earlier post a hope to come home around the Monday following the last day of chemotherapy (Saturday night), we’ve had lots of “when are you coming home?” questions. Unfortunately the answer right now is, “We don’t know.” We do know that we have a meeting with the stem cell transplant specialist on Wednesday, so it won’t be before then. However, I wouldn’t be surprised if it’s shortly after that (God willing).
The things that need to fall in place before Eli can go home include: Pain level manageable without a morphine drip, blood pressure stabilized and managed, sodium levels stable and eating/drinking on his own. We were very close to a trip to the Intensive Care Unit with Eli’s sodium levels steadily decreasing despite having sodium in his IV drips. Fortunately, those seem to have stabilized themselves the last day or two after they put extra sodium in his IV, so as long as that stays constant over the next few days, we won’t have to worry about the side effect of really low sodium: seizures.
It’s great to see Eli down to 2 bags in his IV instead of the 5 or 6 he’s had the last several days. Now he’s just getting nutrition and lipids. Once he’s eating and drinking on his own, that will go away as well. We hope that his energy and wanting to play will start to pick up in the next few days as well.
We had to put a tube down Eli’s nose so that he could take his oral medications because he was throwing up 100% of the time when anything would go in his mouth. He didn’t like it going in at all, but he liked it going in even less the second time after he yanked it out in the middle of the night. It has stayed in fine since that episode. Thankfully, it does the trick and now we can give him the oral meds without them immediately coming back up. It still does randomly happen, but rarely.
The blood pressure seems to be a bit better now that the doctors have started Eli on a beta blocker. We’ll definitely be going home with blood pressure medicine, but as the tumor shrinks, it should help. The tumor releases hormones that kick up Eli’s blood pressure, so the best medicine is obviously chemo. Part of the reason Eli should start feeling better due to the chemo is because of the shrinking tumor. However, they keep reminding us that it’s very large, so it will take time.
The activity of our friends and family on this CarePage has been great. We love reading the messages on the Message Board. We can see who all has signed up, how many times they have visited, and when they visited last. We have 148 CarePage visitors as of right now with 867 total CarePage visits. Of course, 41 of those visits come from my brother Adam, who must login multiple times a day regardless of whether there has been an update or not. 🙂 Eli says hi to all of his nurses that have signed up for his CarePage, too. He promises to bring his grabber toy the next time we come back so he can get you.
The song of the day is “Let us Pray” by Steven Curtis Chapman:
Let us approach the throne of grace with confidence
As our prayers draw us near
To the One who knows our needs
Before we even call His name
Let us pray, let us pray, everywhere in every way
Every moment of the day, it is the right time
For the Father above, He is listening with love
And He wants to answer us, so let us pray

I’d love for these updates to be all good news and encouraging, but unfortunately that’s not always going to be the case. The last two days have been pretty draining. It started yesterday with a failed MIBG scan. Eli couldn’t take the sedation medicine because it was by mouth, and he is starting to throw up anything he has to take by mouth. Plus, it’s a LOT of medicine and it tastes really nasty. So they tried to give him a mild sedative via IV to do the trick, but he has to lie perfectly still for 20 minutes or else the entire test is ruined. It’s like taking a picture with a very slow shutter speed. Any movement and the picture turns out blurry. Even if that movement is 19 minutes into the 20 minute picture. So after 3 or 4 failed attempts (darn itchy nose), we had to resort to amping up his IV meds. That ended up working enough for one 20 minute shot, but they didn’t get nearly the ones they needed done. Eventually the IV meds had an opposite effect and he was wide awake.
So yesterday was a flop. They were able to get us in first thing in the morning today for a retry. This time they brought in the anesthesiologist and put him out cold. Since the radiation was wearing out in his body, each test took 25 minutes instead of 20. Also, the anesthesia basically made him irritable and tired the rest of the day, so we really didn’t get any quality time with Eli at all today.
The worst news came once the doctors had reviewed the MIBG scan. They had originally told us from the bone scan that there were no tumors on the bones. However, the more specific MIBG scan results confirmed that the few areas they were wondering about turns out to be positive tumors on the bone, which we were told is difficult to remove. They seem to be on his spine, hips, and legs, but it’s all still preliminary and we don’t have the final, final report yet. Either way, there is definitely tumor on the bones.
So one of our only pieces of positive news turns out to be negative after all. A pretty big emotional setback. The only positive thing is that they don’t change the treatment at all based on this news. The way they handle those are the same way they handle everything else. They go through hard hitting chemotherapy and hope it gets rid of the tumors on the bones, too.
The nurse educator did tell us that if they felt things were hopeless, they would definitely tell us. If they feel the process of fixing Eli was going to put him through a lot for no chance of survival, they’d honestly tell us. They have had to do it in the past for some families. They have also successfully treated neuroblastoma like this in the past where it was on the bones and everything at Iowa City. Their plan for curing it is not for the next few weeks, it’s many months into the future, so there is still some chance. We obviously know that if it’s God’s will, there is a 100% chance. I guess the take away of the day is to keep praying. I’ve told God I’m going to be like the persistent widow who came before the judge day after day after day until she wore him down and he gave her what she was asking for (Luke 18:1-8). A day isn’t going to go by that I’m not going to ask God to heal our son. The fact that there are others praying the same is great encouragement.
1 Peter 5:7 – “Casting all your anxieties on him, because He cares for you.”

I hope everyone had a good Fourth of July. I realize it’s just another day for some of our readers, but for most it means celebration, a day off, a parade, and fireworks. Unfortunately we had none of the above. We did, however, have several visitors who got to see Eli in continued high spirits, which was fun. It also gave him some people to show off his “flag tattoos” to. We even met another couple from Iowa City that were here visiting the 13 year old recovering from the stick in his eye downstairs. We were really looking forward to the Ames Fourth of July parade, it’s always really good. There were fireworks in Iowa City that we could have seen from the roof of the hospital, but Eli had already fallen asleep and was getting his Day 2 chemo dose, so we made the executive decision to skip it. We’ll see if it comes up later today, if it does, we’ll have a pretty disappointed 3 year old on our hands.
Speaking of chemo, that officially started on Monday night at 6pm (it takes 6 hours to completely drip into his system). That is considered “Day One” of five days. From appearances, it’s no different than anything else. It’s just yet another bag on his IV pole that is hooked up to his central line. Or as Eli refers to them, “my pipes”. 🙂
We had a 1.5 hour “Chemo 101” talk with a nurse educator Monday afternoon, but there’s more to learn. As you’re probably aware, chemotherapy is a cocktail of drugs that basically kills cells in your body. It kills the good cells and the bad tumor cells. The idea is that the good cells will come back and replenish themselves while the tumor cells won’t. That’s why you lose your hair, but it will come back. Lacey wants to buzz his hair when we get home so his hair loss in 2-3 weeks won’t be so traumatic for her. Thankfully he’s a little boy that probably couldn’t care less about having hair, except that when he drinks his juice he likes to run his fingers through it. He’ll just have to use mom’s hair instead.
Since chemo kills the good cells, it also means his blood counts go way down and he is much more sensitive to getting sick. While normally we’d have enough white blood cells to fight off any little sniffle or cough, Eli won’t, so if he catches something, it can quickly become life threatening. I asked Lacey how long she thought it would take her to build the sterile padded room for Eli to live in for the next 2-3 weeks at home. You laugh, but I was only half joking. 🙂
“Day Two” of chemo was last night and it seemed to go well. One side effect of the medicine is nausea, and we have seen that he occasionally will throw up his oral medicine after he takes it, which of course means he has to take it again, which he doesn’t like at all. If all goes according to plan, the last “day” of chemo will be Saturday night from 6pm-12am. Sunday will be a day of monitoring to see how he is doing and to watch his fluid/food intake without any nourishment from IV. We could potentially be sent home Monday. We’d be home for a 2-3 weeks, then be back for another 6 days in Iowa City to do Round 2 of chemo. There will be at least 5 rounds of that. They’ll see how large the tumor is and think about surgery somewhere around Rounds 3 and 4. Today he has his MIBG scan to see exactly where the neuroblastoma tumor cells are.

Our new favorite pastime is to write down Eli’s mumblings when he starts to wake up from sleeping. His sleep talking is pretty funny sometimes. Yesterday was “Mommy you don’t have to catch those ears” and this morning it was “Your kisses are slobbery.” 🙂 Gaurav, Hina, and my folks hopefully got some good pictures yesterday that I’ll post as soon as they e-mail them to me. I can have CarePages send out a notification when I add new photos, so I’ll do that.
Thanks to everyone (so far 108 of you) that have been checking these updates and continuing to pray for our little guy. Continue to pray for the doctor’s wisdom in dealing with this rare cancer. I asked the nurse educator how many cases they see of neuroblastoma in a year at the University of Iowa Hospital and she said, “Oh, a handful. Probably 2 or 3 a year.” Quite a bit lower than I was expecting, but they are leading experts in giving chemo to kids, so we’re happy to be here. There is a “nurse in training” here and buy CBD products teaching nurse told her, “Don’t worry, this is the most complicated chemo you’ll do. If you can get this down, the others will be a breeze.” If you want to find out more about neuroblastoma, the nurse encouraged us to go to a source of the best research done. http://www.curesearch.org will allow you to pick neuroblastoma from a list of cancers and you can find out more information on the cancer and the treatment there.

I took a day off from updating yesterday because there weren’t really any results ready to report on. Boy did I hear about it! It wasn’t enough to post new pictures in the Photo Gallery I guess. As people were assuming based on the pictures, yes, Eli had a good morning yesterday. He had the doctors laughing as they got a glimpse of our normal quick witted son. He was actually wanting to visit the playroom, which was good because he needed to get off the bed and walk a little. The afternoon was a bit of a different story since it was full of tests and he wore out pretty quickly.
We are constantly battling with Eli’s blood pressure, so that is something to continue to pray about. Yesterday it got up to 191 over 137 (normal is 120 over 70). They have potent medicine they give him to bring it down quickly, but the side effect is that it makes his heart race (up to 190 beats per minute), which is also scary. The worst part is that his weight loss has caused his chest walls to be thin, so you can actually see his heart beating like crazy through the skin. This morning it seems to be back under control, but the blood pressure always threatens to run high.
As far as the tests go, we had a hearing test, an echo cardiogram test (heart ultrasound), height/weight measurement for accurate chemo amounts, and the GFR kidney test to see how well his kidney is functioning (also to determine chemo amounts). The hearing and echo cardiogram tests were to get a baseline of what Eli’s stats were BEFORE going into chemo so we can see how chemo is effecting his hearing and his heart throughout the process. The hearing test came back normal and the heart test isn’t in yet, but unofficially the good doctor told us everything looked perfect as we were all looking at the ultrasound. The GFR test, as you may recall, was to see how well his kidney was functioning to see if we could give him the full blast of chemo. Thanks to everyone who prayed on this point. It was effective and the results came back this morning with a report of fully functioning kidneys!
So this afternoon we start chemo. Also this afternoon they’ll inject some radioactive material that will go through his system over the next two days and on Thursday he’ll have an MIBG scan that more precisely tells us where the neuroblastoma tumor is.
The ripple this little 3 year old has sent through the prayer waves around the world has left Lacey and I in awe. Not only have we heard from people all over the US (many of whom we’ve never met), but we know prayers are being lifted up in Brazil, France, Australia, New Zealand, India, Canada, Ireland, Singapore, and the UK. There are probably even more countries represented that we haven’t heard from yet. We even had 3 believers stop up this morning that we have never met before. They heard from friends at Cornerstone Church that we were here and they happened to be one floor down praying for their pastor’s son who was there because a stick went right into his eye in a freak accident yesterday. God was watching over him and he has full sight this morning in his eye, “beyond the Doctor’s understanding.” They smiled as they said that last part. They prayed for us in the room before they left. What an encouragement.

Thanks to everyone who has been providing us with encouraging verses from God’s Word. Some of them have made it on our white board in our room, which people are definitely seeing. We are so thankful for you all of you that have been daily praying for Eli. It’s effect is never understimated and is always appreciated. I’ve lost count of the number of prayer chains that Eli has been added to. Lacey said yesterday, “We are going to owe so many people so many prayers, how are we going to pay them all back?” 🙂 What a benefit of being a part of an amazing body of believers. How would a person without a belief in God and His perfect power cope with a situation so dismal? What a hopeless and depressing feeling that would be.
Cornerstone Church’s Preschool Ministry Coordinator stopped by yesterday and left us some great gifts, one of which was an awesome Hillsong United CD full of great worship tunes. Here’s one that hit me today:
All I Need Is You
Left my fear by the side of the road
Hear you speak, Won’t let go
Fall to my knees as I lift my hands to pray
Got every reason to be here again
Father’s love that draws me in
And all my eyes wanna see is a glimpse of you
All I need is You
All I need is You Lord, is You Lord
One more day and it’s not the same
Your spirit calls my heart to sing
Drawn to the voice of my Saviour once again
Where would my soul be without Your Son?
Gave His life to save the earth
Rest in the thought that You’re watching over me
All I need is You
All I need is You Lord, is You Lord
You hold the universe
You hold everyone on earth
You hold the universe
You Hold, You Hold (Eli)