It has been a long time since I last posted an update on Lyric.  He still has been receiving monthly chemo treatments at the hospital, along with his spinal taps, and NG tube change.  He continues to receive chemo in his  NG tube daily.  I am happy to report he made it through 2024 without any overnight hospitalizations!

Lyric has continued to grow and get stronger, despite all he has been through.  He is very smart.  He loves video games and playing outside.  He has developed quite the sense of humor, which is amazing, considering what he has been through.  He is quite an inspiration!  We love him so much.

Lyric Has THREE more treatments to go before he can “ring the bell” which signals cancer free.  It gives me the chills to think about it.  We are all excited to end this chapter!!

Thank you all for following our little Lyric’s story and for your support, love and prayers over these last two long years.  ❤️‍🩹🙏🏼

Just an update on our Lyric.  It has been 6 months since his last hospitalization.  He finished his last 5-day in hospital treatment last month.  He will now receive in-hospital treatments 1 day each month.  He still gets daily chemo in his NG tube.  He has 11 months of chemo treatments remaining in his maintenance phase.  You hate to rush life, but we are all looking forward to the end of his treatments.

Lyric has been growing so much.  It is crazy how he can grow with all of these treatments.  He is such a sweet, lovable, funny boy!  Despite everything, he continues to laugh and smile.  He truly has taught us to smile through the rain.  

He is eating pretty good now, maintaining his weight.  He even loves bacon now! 

We want to thank all of you for helping us through this last year and a half.  The pain, sorrow, tears, stress and worry would have been FAR more difficult to bear without the love and support of everyone who receives these updates.  You have helped us in so many ways, and there is no way to thank you all.  May the light you have shined upon us come back to you 100-fold. 

Just an update on our Lyric. It has been two months since Lyric’s last hospitalization! 

Lyric had in-hospital chemo treatment for five days last week along with getting a new NG tube put in. He was exhausted by the end of the week, but he made it through. He has this treatment/NG tube replacement done once a month. He continues to get daily chemo treatments in his NG tube. 

As you will see, his hair is growing back! In maintenance phase (which lasts until May 2025), this is what happens due to the type/dose of chemo (from what we understand).  

His neutrophils and numbers are remaining consistent, which means they have found a dose that his body can tolerate. While they intend to increase this as time goes on, he is holding his own for now.  

He has been getting stronger and able to eat more, reducing the number of night feedings. He hasn’t had to have one in some time, which is so good to hear!

Lyric started his treatment at the age of 3 years and 10 months.  He turns 5 soon!  He is such a sweet boy. He reminds us to smile and laugh, even through the rain! ❤️‍🩹 

As always thank you for the tremendous support throughout this entire journey. We cannot express to you how much it means to all of us!! ❤️‍🩹 God bless you all.

The last 2 months of 2023, were rough with Lyric being hospitalized four different times, the last being at Christmas time when he was released on Christmas Eve!  They stopped the chemo at that time, as his neutrophils were so low.  

Since then, Lyric has been doing pretty good. His hair has started to grow back, his “Lyric hair” as he calls it. He’s recently re-started his daily at home chemo. Yesterday he went in to get labs done to see how he’s tolerating the low doses. His number were all good, in fact, his neutrophils were too high. Go figure. The goal in maintenance is is give him enough chemo to make sure it’s doing what it’s supposed to, but not so much that he’s constantly becoming neutropenic. So yesterday they upped his dose of at home chemo from 25% of the original dose, to 50%. He goes back in 2 weeks to get rechecked, which will also be the week he goes into the clinic Monday-Friday for chemo treatments through his port. We’re going to hope that goes well, but we will just have to wait and see. He’ll also have to get his NG tube changed that week. It’ll be a long, rough week regardless. But hoping the 5 day chemo doesn’t wipe him out.  It is a constant struggle to find that balancing point.

 Lyric has been doing a really good job with eating and drinking lately. I don’t think he quite makes the goal everyday, but we haven’t been giving him a feeding or fluids at night through his NG tube, and so far that seems to be going okay. He doesn’t like to be hooked up to his feeding machine, so it’s a good way to remind him to eat and keep drinking throughout the day so that we don’t have to hook him up.

He still continues to re-potty train himself, and he takes a lot of pride in going to the potty alone. He also gets stronger by the day. He is moving so good-able to sit down on the floor and get back up effortlessly, can walk up and down the stairs by himself while holding the railing, etc. We stopped his med for peripheral neuropathy (which is numbness in the hands and feet due to some of the chemo he gets). We worried that maybe getting off that medicine would affect his movement, but so far it hasn’t. So that’s one less med that we have to give him, and one less med he has to worry about receiving. Currently he gets very minimal medications compared to what he was getting before, so that has been good for all of us.  

Lyric has been enjoying staying busy-playing with his brother, going out to play at the children’s museum, climbing around in play-lands, going to arcades, etc. It’s been good for him to be able to go out and play and do things like a normal kid should. It’s been good for him in general to have a stretch of time of feeling good and being able to do things again that he lost the ability to do for the last year, even just eating. He will actually sit with a plate of food and eat what he wants from it. He hasn’t done that since before he was diagnosed over a year ago. All of the little things help all of us get through day to day life more “normally”, whatever that means!  The simple things like your child eating, can be taken for granted when you have a child with leukemia.  

As always, thank you ALL for your continued support and for following Lyrics story.  It has always been very much appreciated, and always will be!  We are hopeful for a better year in 2024.  ❤️‍🩹❤️‍🩹

Latest Caring Bridge Jpurnal update 12/2/23 from Amanda Schmitt

Where to start!

Lyric was finally able to start chemo again. They had stopped it while he was in the hospital.  He received chemo at the clinic Monday-Friday this week.  He got through it without too much trouble. His energy dropped a little bit but just having to go there 5 days in a row exhausted all of us I think. He also got a blood test for immune system related levels because he’s had so many infections. One of them was low, so he is going to be getting a transfusion (IV immunoglobulin, it is called) and that should help boost his immune system a little bit to hopefully help keep him out of the hospital for a while! His next appointment is December 14th and it sounds like that’s when he’ll receive the IVig. 

Sunday night Lyric and Matix were playing together in the kitchen and Lyrics NG tube got caught under Matix and got pulled out accidentally. So Monday at his appointment he had to get a new one put in. I think I forgot to mention in any other entry that we decided to go without the bridle for his NG tube from now on. (One less thing to put him through repeatedly.)  So, even though it was unfortunate that it got pulled out (we’ve got it taped onto his cheek way better this time). we were able to see his whole face for the first time since he got it. The nurses and his primary oncologist were happy to see his face as well. Also, this week was the first time he was able/willing to do a little walking while getting chemo, and he was pulling his machine along with him. It is heartbreaking, but it really shows how awesome and resilient children are. He is the real MVP! He handled everything at the clinic quite well in general. I think he is starting to get back to being more comfortable going there all around, which is also kind of sad, but makes everything a little “easier”, for lack of a better word.

His hair is growing back more and more everyday. He is happy about that. He’s been eating a little more/variety of food. Getting stronger everyday-walking up and downstairs with assistance now, bending over to pick things up off the ground, playing more in general. He recently has started to be willing to pee on the potty and in the urinal. He reverted out of being potty trained a while back, and went through a lot of trauma with constipation issues, so he has been very proud of himself for the little steps.  ❤️

Today he did quite a bit independently-peed in urinal, washed his hands at the sink, brushed his teeth, and took his gummy vitamins with minimal assistance. That may seem small for some people, but for him, and us, it was huge, and his reaction was priceless! He was just so proud with himself today - it was amazing to see. It’s one thing to watch your child learn these skills for the first time… but to watch your child lose all of it, then re-learn and regain them is absolutely PRICELESS. He is the greatest. ❤️

Monday he will start at home chemo again at only 50% of the original dose to start, and will work his way up to 80% of that atmax. We are hoping things can level out a little bit now. So keep sending all of the positive thoughts, vibes, and prayers please and thank you.  🙏   

I think that’s all my brain can write for now. Thank you all for the continued support, thoughts and prayers. It means more than you will ever know. ❤️

Latest caring bridge journal 11-19-23 from Amandanbsp;

Since the last update, Lyric was doing good after getting discharged from the hospital. He finished antibiotics for the orbital cellulitis on November 11th. Around that time, he stopped eating and drinking. He was supposed to start chemo last week where he has to go into the clinic Monday-Friday to receive it, but he was neutropenic so it got delayed. Thursday and Friday he stayed in bed mostly and we could tell he wasn’t feeling very good. He had labs Friday to see if he was ready for the 5 days of chemo, and finally he wasn’t neutropenic anymore so they scheduled it for the upcoming week. 

Lyric woke up at 1:30 am on Saturday with a fever and stomach pain, so off to the ER he went at around 3:30 am. He was admitted into the hospital and is still here. After running some tests, bloodwork, etc we found that he has Cdiff. He had this once before a while back. This time it’s likely due to all of the antibiotics he was on his last hospital stay and being neutropenic for so long. However, a couple of the nurses expressed that they aren’t convinced he has Cdiff, which is something that we’ll have to bring up tomorrow during rounds with the doctors. We agree that this is different from when he had it before. Maybe he does have it, maybe there’s something else going on too. That’s one of the hardest parts about all of this, the constant fear that we are missing something.

This is the 3rd hospital stay in less than a month. We don’t know for sure yet, but his chemo will likely get delayed again. All of his chemo has been on hold for several weeks now, so as you can imagine it is completely frustrating to run into complication after complication even when he’s not getting chemo, while simultaneously worrying about him having gaps in chemo treatments, which leads to the fear of his cancer relapsing. 

Today he also had his NG tube changed, which is awful every single time. He kept saying “I’m scared!” while crying. It never gets any easier to hear your child tell you they are scared, and beg you not to do something and then have to do it anyways. In fact, it feels more heartbreaking every time. Today I just cried with him, told him that I don’t want to do it either, and that it’s just not fair that he has to go through this. That is and forever will be the truth. He doesn’t deserve all of this pain and suffering.  

He’s still spiking fevers and just doesn’t feel very good. There are hints of playfulness when the Tylenol kicks in, but he’s mostly just been resting. We’re not entirely sure how long he’ll be here this time. Right now it looks like we will be in the hospital for Thanksgiving. 😢

As always, thank you all for the continued thoughts, support, and prayers. We were hoping by now that things would be a little more leveled out, which is what the doctors kept telling us throughout the intense part of his treatment, but there is absolutely nothing level. It’s still chaotic, and we appreciate all of you for being there for us throughout all of this. ❤️‍🩹

From Caring Bridge on November 5, 2023 (Amanda Schmitt)

Well…..

Lyric is now in “maintenance,” which will last for the remainder of his treatment. He WILL be done with treatment on May 22, 2025 no matter what. He will have delays, but he no longer has to “make up” any chemo that has to be missed due to any complications, as long as he remains in clinical remission, which is more likely than the alternative.  

Lyric ended up in the hospital AGAIN, just 2 weeks after his last hospital stay. He randomly has orbital cellulitis, which is an infection of the eye and surrounding tissues. We caught it right away and he was put on triple IV antibiotics through his port, and that narrowed down as they ruled other things out. He wasn’t neutropenic upon being admitted, but did need a blood transfusion when he got admitted. 

 As the days passed, his neutrophils started to drop and he became neutropenic, which added days to his stay. They think his neutrophils dropping was a mixture of the infection and the daily chemo he’s been getting at home. Today his neutrophils finally started to come back up, so he switched over to one oral antibiotic now and is being monitored for 24 hours on that before being discharged. He should be out today (Sunday).  

So for maintenance, they sometimes have to adjust the chemo dosing in the first few months. They want to give him enough chemo to keep the leukemia away, but not make his levels drop to the point of transfusions and neutropenia. So, due to Lyrics infection and his blood counts dropping, he is currently on a pause of getting chemo. When he does start back up on chemo (we’re not sure when exactly that is yet, but will be after he finishes 14 days in total of antibiotics), he will start back on daily chemo at 50% of the dose he was being given, then work our way up to only 80% of the original dose due to his bodies response. He also had a genetic test for the chemo that he gets daily at home that showed one particular gene doesn’t process the chemo in his body all the way. That just means that they KNOW he is sensitive to the chemo and further justifies lowering the dose that he will get of that chemo moving forward.

This is the first hospital stay that Lyric has been running around the halls and playing a lot. He LOVES to “prank” the nurses!! So, he’s kept himself very busy trying to startle them lol! From Whoopie cushions, to fake bugs, to fake chips that pop out a fake snake when you open it… he’s very proud of his tricks and thinks it’s so funny. It hasn’t been great the entire time, but not all bad either.  

Maintenance is supposed to be more laid back, but it takes a while to get the right dosing of chemo. Eventually it SHOULD level out a little, or at least we hope so! Lyric has proven over and over that he is sensitive to chemo, which makes us nervous, and even makes the doctors a little nervous. But we are all on the same page of “taking extra precaution” with him. Maintenance is meant to be less intense, but also, our goal is to keep him cancer free for the rest of his life. It’s a delicate, yet terrifying, dance of chemo dosing. 🤷‍♀️ There isn’t relief in that. Quite frankly as his parents, there will never be relief from worrying about his cancer coming back. It will always be in the back of our minds I think. But for now, he is getting the treatment and doing okay, aside from the hospital stay.

Hes more mobile, in a better mood in general, and is eating and drinking more than he was. His hair is starting to grow back, and will continue to do so…. And it is so fricken cute. He is excited about his “Lyric hair” coming back. When we mention to him that his hair is growing back he says “REALLY?!” ❤️  

He spent Halloween at the hospital. His brother Matix has been visiting and they got to have a little fun together on Halloween in their costumes.

Idk what else to write. I’m sure I’m missing things! Brain function is nothing close to optimal at this point. The struggle remains, but we continue on. Lyric is so strong, and paves his own path through this nightmare. He makes sure all the doctors and nurses know that he does things on his terms, rightfully so. He is a warrior. ❤️

As always, thank you all for the continued support, thoughts, and prayers. You all are amazing for everything that you’ve done and continue to do for us. It takes a village to get through the horror of childhood cancer, and you all have showed up relentlessly, over and over. I can’t thank you enough. ❤️❤️❤️❤️

Lyric was released from the hospital yesterday after 8 long days! He was so excited he was dancing in his car seat and took off running down the sidewalk when he got home! 😂

His neutrophils are still low and he is still on antibiotics, but he is home!!! ❤️❤️‍🩹

Lyric started Phase 5 maintenance last Thursday. It requires a spinal tap every three months, steroids for the first 5 days of every month, DAILY low dose home chemo treatments, NG tube change every month, blood draws every couple of weeks and a variety of meds - too many to count!

He gets so many meds, it is so sad to see. He whimpers in agony sometimes. So hard to watch. This sweet boy doesn’t deserve this. Maintenance lasts for at least another 19 months. ETA for the end of this cycle is May 2025.  

Not very much light at the end of the tunnel, but some.

Caring bridge Update - 10-13-23 continued . . . 

My original understanding of the final phase, was that it would be less intense and things will start to be more “normal”. But after hearing more thoroughly how the first part of maintenance will go, it’ll probably still be a little rough for a few months. He won’t be getting nearly as much as the last part of phase 4, but it’ll still be enough to cause us to be on alert, which I think we will do for a while regardless of how often or not he has to go in for treatment. The first 3 months of maintenance he'll still be getting treatments at clinic, some more spinal taps and at home chemo treatments that will involve that chemo called methotrexate that caused some more serious complications a while back. He’ll also be on and off steroids for 5 days at a time which he always seems to struggle with as well.  

Lyric did have some good times at the hospital this time around though. I guess he’s gotten more “used” to it as sad as that is. He had 2 amazing volunteers come play/talk about super hero stuff with him for over an hour! He loved that so much. He played lots of pranks on the nurses, had the school lady come in and do “school work” with him that he seemed to enjoy quite a bit! He was way more interactive with the OT’s and PT’s. He handled it like the true warrior that he is and we couldn’t be more proud of him for that! ❤️

I apologize for the lack of updates. It has been more unbearable than ever the last month. I literally can’t get my brain to function hardly at all. I mostly only have the capacity to absorb and take care of Lyrics medical needs, and even that is pushing it at times!! I’m sure some of you have at least been able to see the shorter updates that my mom has been posting on Facebook (thank you mom❤️).  

As always, thank you all so much for the continued support. Fawn and I have had to miss an unbelievable amount of work lately, plus we were all sick in the weeks leading up to lyric getting hospitalized which caused us to miss more work. Matix had an eye/ear/sinus infection for a couple weeks and fawn and I had a “common cold” that was wicked and lasted a couple weeks as well, probably due to how worn down our bodies are at this point. We are the most worn down right now than we have been throughout lyrics treatment, which is so hard to explain. It’s been almost 10 months of this, so we appreciate all of you for EVERYTHING! It really does mean more than you all will ever know. ❤️

Caring Bridge Journal update 113/23: 🥴 (Amanda Schmitt)

I started writing this weeks ago now… it has been such a struggle to think straight. This one’s going to be a long one because I haven’t been able to write for weeks.

A lot of times I try to avoid writing the better days, the more hopeful days, even though I know that is what people want to hear. But, the truth is, writing the good times and putting a lot of hope behind them makes it that much harder when the bad times come.  

I learned over Lyrics intense treatment that I couldn’t always take the doctors word for everything. They can’t predict the outcome for Lyric. I would get my hopes way up over the little milestones, and don’t get me wrong, the little milestones are all miracles and he deserves every one of them to be celebrated, but in my mind I’ve learned to keep them at bay. It makes it 1,000x harder to accept and handle the complications when you are constantly getting your hopes up over every little thing.  

The last 9 1/2 months have been pure . Of course Lyric has had good days, and they have been so special, and yet so hard at the same time. It’s hard to fully enjoy the good days when you’re still actively trying to recover from all of the trauma. I yearn for a day that I can look back and feel relief, if that is possible. I’d like to think that that day is soon, but even though Lyric is done with intense treatment, he still has just over one and a half years left of treatment in total. So, I will remain guarded for a while I’m sure.  

He did have a stretch of time between the first part of phase 4 and the second and final part, where he didn’t have chemo for a couple weeks. He started eating and playing and it was amazing to get a glimpse of our true little boy. That quickly started to change. The second half of this phase was rough for all of us, and still is weeks after phase 4 ending. He received so much chemo I can’t even wrap my brain around it. We’re going on 10 months non stop of this reality and it’s more difficult now than ever.  

The downward slide started with Lyric vomiting out his NG tube back when he was still in phase 4, which he hadn’t done in a while. We were at Culver's one evening (he likes to go in to Culver's even though he usually only eats a few fries and that’s it). It was super busy, and I don’t think he was even nauseous, he just gets more sensitive to textures of food etc the more chemo that he gets. It was a super busy Friday night, he vomited, and out came the tube. Fawn and I scrambled to get the pick that unlocks the clip attached to the bridle so we could take the tube out, that now hung out of his nose and mouth. It’s something we’ve had to do a couple times, but it never gets easier. I couldn’t control the shaking in my hands, which made it extremely difficult to get the tiny pick into the slit on the tiny clip to pop it open and release the tube so we could pull it out and make him more comfortable. He went to the ER the next day to get that put back in, even though that following Thursday he was scheduled to get the tube and bridle replaced during his sedation for a spinal tap.  

The last few weeks of phase 4 involved many chemo treatments through his port, chemo treatments at home, and multiple spinal taps with chemo injected into his spine, along with the NG tube/bridle change. During this time he stopped eating and drinking, was unable to leave bed much, and his mood swings became extreme. He had many days in those weeks of pure rage… throwing everything in site, crying and screaming uncontrollably, hitting, trying to bite, pretty much anything you can think of to try to destruct everything around him. It was horrible to watch him struggle like that. Fawn and I ended up having to tag team when he got like that because it was a lot to handle while being so worn out from 9 1/2 months of .

The week after he finished phase 4, he ended up needing a blood and platelet transfusion. (Each time he has to get his port accessed it’s us holding him down while he screams and cry’s and begs us to let go. There is nothing easy about any of this.) When he went in to get those first transfusions, he had a fever and was brought up to the 4th floor to be hospitalized because he was neutropenic. Any time he is neutropenic and has a fever he has to be hospitalized because if he gets anything in his blood stream he doesn’t have an immune system to fight it on his own. Which makes it necessary to monitor him in the hospital and start running tests to figure out what’s causing the fever. When he got up there, and it sunk in that he had to stay, he had a complete meltdown. He screamed for 30 minutes straight, and I don’t blame him. He screamed until he wore himself out, fell asleep, and when he woke up from that he screamed some more. He has been through a lot of trauma on the 4th floor. It’s heartbreaking that there isn’t anything we can say to him to make it better for him.  

From there he had multiple other blood and platelet transfusions over a few days, I lost track of how many. They took blood cultures, and ultimately found 2 different bacteria’s in his blood stream that were bacteria’s that are naturally occurring in the body/on the skin. But because he was neutropenic for a few weeks, his body was unable to keep those bacteria’s from entering the blood stream. He was treated with 2 different IV antibiotics over the course of 10 days (I think… I also lost track of how many days he was hospitalized). The fevers stopped after several days. They took blood cultures every day for several days and only the culture on day 1 was growing the 2 bacterias, meaning the antibiotics were doing their job.

On day 2 of being hospitalized, he again vomited and out came the tube. At this point he was due to get the NG tube and bridle replaced within the next week, so they replaced it all. His platelets were lower at this time, but not low enough to transfuse. (His platelets have to be at a certain level to get the bridle replaced, in the event there is bleeding). He was at a level that they were able to do it, but he ended up having some issues with bleeding. They must’ve hit something when putting the new bridle in, causing him to bleed a lot. A lot of the blood he swallowed, and about 10 minutes after they replaced the tube and bridle, he vomited up a TON of blood and the tube came out again. At the time they were unsure of why he vomited so much blood, so as you can imagine we were all terrified of what was happening. Thankfully (using that word loosely) they came to the conclusion that it was from something that cut open when the bridle was being put in and his platelets being low, his body couldn’t clot the cut to stop the bleeding quickly. The bleeding lasted for a while, then it did stop eventually. That’s when he ended up getting more blood and platelet transfusions. They waited a day to put the tube back in to avoid another bleeding mishap. They transfused him with more platelets before doing so, even though he technically didn’t need it according to where his platelet count was. But, they wanted to be sure that that didn’t happen again. The usual number to transfuse for platelets is “10”, they have his transfusion threshold at “20” now for platelets due to him bleeding so much when his platelet count was at “26”. It IS common for someone bleed a little after getting a bridle put in, but it was uncommon for him to bleed as much as he did for where his counts were at. But that is on par with how Lyric has been throughout treatment. He’s had several “uncommon” complications throughout his treatment so far, which absolutely adds to our worry and stress as we move forward. It’s terrifying, and that’s putting it lightly.  

Lyric was released from the hospital yesterday night, as his blood counts finally spiked up on their own, his fevers stopped, and he had several days blood cultures that were negative for bacteria. He received his last dose of antibiotic at 6pm, and was out of there by 7pm. Of course his first stop was Culver’s. He loves going in to get fries even if he can only eat a few. So he was happy to be able to do that again. He was thrilled in general to get out of there, we all were. Unfortunately, minutes after he got back to the house, he vomited and his NG tube came out AGAIN! (This is why I try to steer my brain away from over-celebrating, because at any moment literally anything can happen to him. We live in a constant state of adrenaline/fear/worry.) So, anyways, today we brought him in to the clinic to get the tube put in again, which also always involves us holding him down while he screams for us to let go. He did not want to go in. His trust is broken because we’ve had so many “routine appointments” where we’ve told him “it’ll only be a few hours” that turn into being hospitalized for over a week. It is very hard for him, for all of us to have to continue on. But we do. And we’re so proud of him for handling all of it.

Tuesday he goes in to get his blood counts checked, which will determine when he starts the final phase, “maintenance”. It may be Thursday that he starts, or it may get pushed back another week. It just all depends on how his body recovers.

Just an update on our sweet Lyric. He was admitted into the hospital yesterday.  

Lyric’s NG tube was clogged last night, and it broke when trying to unclog it. So he had to get a new one this morning and a new nose bridal put in since he’s close to being due for a new one (they put a new one in every month). In the process of doing this, something must have cut open inside when they were inserting it, causing a bleed.  

His platelets are a low, and he’s obviously low enough because the bleeding was pretty intense and he swallowed a bunch of blood that was bleeding out from his nose. He then vomited up quite a bit of blood. Also, he threw up his brand new NG tube so now he has to get another one put in again later.  

He is getting a platelet transfusion right now. He also just got a blood transfusion. They also will be drawing labs for clotting factors because he’s still bleeding and swallowing it. If he’s low on certain clotting factors that can help replace them. Also if the bleeding doesn’t stop they can sedate him and put a scope in to find where the bleeding is coming from and cauterize it. Hopefully doesn’t get to that point.   

Completely separate from the bleeding, they also found some bacteria growing in the blood cultures they started yesterday, which was causing the fevers he has been having. So, they have to figure out what kind of bacteria and test which antibiotics will effectively treat it. So he will be in the children’s hospital at least through the weekend.    

Every time they are in the hospital, something else happens separate from what he originally came in for. He’s doing ‘okay’ right now. Just upset and not feeling good at all. My heart is honestly breaking for him.  

😞

We just made it through Phase 4 last Thursday and we’re hoping to catch a break. That’s not going to happen for awhile yet, it seems.

Thank you all for your support and prayers during this stressful time. ❤️❤️‍🩹

Caring Bridge Journal update 9/6/23:

Some of you may have already seen on Facebook that Lyric has had some awesome days of feeling good. Eating different food (carrots, watermelon, even wanted to learn how to make steak lol and much more), playing, walking a lot, dancing, happy and silly. It has been amazing to see him be able to be a semi normal 4 year old ❤️ This is the first time he has felt this good since all of this started. He hasn’t needed his overnight feeding the last 3 nights which is huge. He’s gaining weight back just fine and definitely working on strengthening his muscles again.  

Monday started the second half of phase 4. This is an intense phase-he was delayed a week starting the second half due to being neutropenic, but so far has handled it well. The next few weeks will probably get rough. This week is Mon-Fri chemo treatments. Next week will be a rough one. Thursday he’ll have 2 chemo treatments, sedation/spinal tap with chemo injected into spine, NG tube changed, and then continue to get chemo treatments through his port at home Fri-Sun. The following week will be a repeat of that. He’ll have one week left of phase 4 after that. I can’t remember off the top of my head what the last week entails. It will be intense chemo treatments the rest of this phase and it will start to bring him back down. Just over 3 weeks left. We’re hoping that nothing happens and that we can get him to maintenance without another hospitalization, but only time will tell.

As much as we’ve loved seeing him feeling so good the last few days, it’ll make it harder when he gets knocked back down. 3 weeks and 3 days left of this phase assuming there are no delays! 🙏🙏 We all need this phase to be done. The last 8 months have felt like an eternity. Once he gets to the last phase “Maintenance”, he won’t be getting nearly as much chemo. I’ve repeated this mainly for myself to keep some sort of “hope” in my mind. Please keep the prayers and good thoughts coming over the upcoming weeks as we get Lyric through this.   

As always A HUGE THANK YOU to EVERYONE who has and still is raising funds for us, sending Lyric gifts, keeping us in your thoughts and prayers. All of it is what keeps us afloat. Fawn and I appreciate every single one of you for how generous you’ve been, even complete strangers! ❤️❤️❤️  

Oh and I forgot to put this in the caring bridge journal- Lyric has his first 2 loose teeth. Think it’s a little early for that, could be because of chemo 🤷‍♀️ Either way, it’s was still exciting to tell him what happens when he loses them 🦷 🧚 🙂

I was going to post pics/videos of him cooking, playing, eating, etc… but this photo is everything! Something wanted us to know undoubtedly that he is being surrounded and protected!! ❤️ A picture is worth a thousand words. 😇 

Today, as many kids go back to school, parents and grandparents are celebrating with back to school smiles and photos. It is so heartwarming to see. 💜 

For us, today, we are just celebrating the fact that for the first time in over 8 months, Lyric was able to eat some food and keep it down. He actually had a little appetite! He didn’t have to have his feeding through his tube last night. As Lyric’s Nana, I honestly started to cry when I heard that. Small miracles. ❤️

We are almost halfway through Phase 4. Lyric is doing 5-days-in-a-row of chemo this week. I hope it doesn’t catch up to him, but for now, he is doing well. 

God bless you all. Thanks for praying with us, sending love, following our journey, and donating to help us make it through this.  

❤️❤️‍🩹

Today Lyric was supposed to start his 5-day in a row chemo treatment, but his neutrophils are too low.  He had blood work done this morning at the hospital.

Delaying treatment is bittersweet, because his little body needs a break from chemo, but it prolongs Phase 4.  He continues to have stomach pain, and he is tired and weak most of the day.  He doesn’t eat much.  However, he does like to go to Culver’s for French fries.  (Side note: Culver gift certificates are a great gift idea.) He eats about five fries and then wants to go home.

On occasion he will smile and play, but not for long.   You can see the pain in his eyes and through his vacant stares.  It is heartbreaking to see.  Right now, he wants to be in bed in a dark, quiet room with his tablet, most of the time.

Thank you all for the continued support, gifts, prayers, thoughts, and donations.  We love and appreciate you all.  ❤️‍🩹❤️‍🩹

Phase 4, which started yesterday, was rough. We are wondering if we can ever catch a break.

Yesterday was a spinal tap with chemo, NG tube changed, and 2 IV chemos.  Lyric is not allowed to eat before sedations, so he was hungry, and screaming to eat something for hours. Then, while he was finally sleeping, we had them prepare as much as possible for the insertion of a new NG tube.  They call certain “trained” nurses in to put the bridle in. Our nurse already had already prepared a bridle for him, but these 2 “trained” nurses that came to do the bridle had one of their own, but they didn’t bother to make sure it was the right size. This nurse even said when she came in that’s she’s done lyrics bridle before; she also had a conversation with our nurse about the bridle before starting. So they put it in. They didn’t tie it until the tube was put in so they knew where to tie and anchor it. Lyric woke up (has to be awake for the tube going in so it doesn’t go somewhere its not supposed to) they put the tube in… then had to wait for X-ray to tie/anchor it to make sure it was in his stomach. The guy with the X-ray was having issues getting his machine to work. Lyrics screaming the entire time because a bunch of people were holding him down. 

 Finally they finished the X-ray and confirmed the tube was in the proper place. They went to clip the tube and bridle in place, but couldn’t get them to fit in there. It took us all like 10 minutes to realize the “trained” nurse who put the bridle in (and ignored  the bridle our nurses said to use) put the wrong size in…. It was too small of a clip for his size tube. So then a different bridle trained nurse came eventually. She was defensive about the wrong bridle placement saying they never bring their own bridles… 🧐 (even though our nurse had the right bridle out and ready) but the first bridle trained nurse didn’t use it,- she used the smaller one that she either brought in or got from some unknown place??? It was strange and disheartening.  But our nurse told her, “no we have the right size bridle right here, but the other nurse didn’t use it she used one she had on her”. So after they went back and forth about it she took out old bridle and put the correct one in. (Mind you we are having to hold lyric down while he’s screaming because the bridle hooks around his septum.) Then, for whatever reason, she accidentally pulled it and it went back through his septum… so she had to get it in AGAIN!

 Finally we got through all of that and Lyric was beyond done being there. It took awhile to give him his 2 IV chemos. They are administered fairly quick, but because of the whole bridle situation - our nurse had to leave and come back because the whole ordeal took so long! Our nurse was pissed and yet again, we were advised to contact patient relations.  It was ridiculous and no excuse for the “trained” nurse to not double check the size before putting it in. Got there at 9:30 and didn’t leave until about 3:30. 

To top it all off, the sticker on his cheek was placed to close to his nose, so we had to remove that (which he hates) and put a new sticker on in the right place.  

We are just speechless at this point.  Not even sure what to do.  He’s been sleepy and not feeling good after this treatment.  He also started steroids again today for a week. (Then off a week, then back on for a week).  He goes back in on Monday for a longer chemo that has a high risk for allergic reaction, so they have to observe him for a couple hours after it’s given. Then back again next Thursday for the same 2 IV chemistry he got today.  This will go on for about two months, we believe.

This has been so difficult for us.  Our spirits are sometimes broken, and are only uplifted by those times when Lyric is feeling better and can smile and feels good enough to play like a 4 year old should.  Thank you all for the prayers, thoughts and continue support- and for following us through this nightmare of a journey.  ❤️‍🩹

Update from caring bridge journal 7/26/23:

Lyric finally got out of the hospital on Saturday. Got the constipation (backed up) issue sorted out, plus a plan to help prevent it from happening again. His open sores on his behind is finally healed, and cinstant diarrhea has stopped. We suspect, though, that it will take quite a while for him to get back to being completely continent, mainly because he’s traumatized from all of the pain he had for so long. 

 We had some serious conversations with his medical team to express our concerns and how to move forward without negative events like this happening again. Clearly expressing to them that in order for this to work, we need them to LISTEN to us when we have concerns, and we also need them to figure out a better system of his actual medical team to all be on the same page.  Often times, on call doctors are other people who are not Lyrics primary team and the my charts, go to random nurses and don’t always make it to his primary team, which is a problem!

We switched the type of formula he gets with his feeding at night. The thought process was that if that’s contributing to any GI discomfort for him, switching to plant based may be easier on him. He’s still not eating much by mouth, but definitely more after leaving the hospital than before. Still very interested in learning how to cook all kinds of foods etc. 

He started a new med for peripheral neuropathy, as we think that may be contributing to his altered gate since he started walking again, as well as some other things that we’ve noticed.  They also have thoughts about the neuropathy and constipation being related to vincristine toxicity, separate from the methotrexate toxicity that we think caused the other complications for him. He’s proven to us by now that his body struggles a lot with chemo, so we made sure his medical team all recognizes that as well. It will always be a balancing act of pros vs cons… he needs chemo to make sure we cure him, but cautiously aware that he has some complications relating to chemo it seems.  

He ended up being neutropenic during hospital stay and still was when we left, which is further indication that the chemo he got through phase 3 is lingering in his system still. He hasn’t had any chemo in weeks now but still his number dropped down. (Probably another reason they had thoughts about vincristine toxicity). That could also partially be from the big open wounds he had for so long. It’s a lot to explain. He didn’t need any blood transfusions though, so that was good.

Lyric has been feeling very good since being out of the hospital. He’s been going to the family restaurant in town for his usual “cheese curds and French fries with ranch and ketchup” (lol he makes sure we know his exact order).  We had a little fire in the back yard to roast hotdogs and s’mores, play with water balloons and water guns, making popcorn (in a machine and microwave… he doesn’t eat it, he just likes the process of it), stayed up late with me for a movie night (sonic prime and iron man/hulk animation movie), and more that I’m probably forgetting. He’s had some good spurts of energy, and has been in good spirits for the most part. We are thankful for that. ❤️

He’s been having some random nausea/vomiting with eating. Probably a mixture of him just not ever feeling a 100% from treatment, as well as some texture issues. But he still is very interested in food despite his difficulties with that, which is good.

He was supposed to start phase 4 last Thursday, but it’s obviously being delayed due to his complications. As you probably already know, we are dreading this phase, but after we get him through this one, he will move onto “maintenance” for the remainder of his treatment where his hair will start growing back and hopefully will have more normalcy. He goes in tomorrow to get his blood cells checked, and talk about the anticipated start date of phase 4. It won’t be until next Thursday or the Thursday after depending on how his body is recovering.  

Please keep us in your thoughts and prayers in the upcoming months. We are expecting it to be pretty rough. As I’ve mentioned before, phase 4 will be heavy chemo treatments again, he will more than likely end up hospitalized again. It’s sad that we know that, but this is how we keep him alive!  It is just a completely messed up situation up all around!  You cannot fully understand how completely messed up all of this is, unless you’ve had to go through it with your child. It’s a messy, traumatizing journey.

I feel like we haven’t mentioned this in a while-but as always we appreciate the continued support from all of you. We appreciate everyone who has reached out and all of the help we receive from all of you for Matix etc. We appreciate the continued donations, as we are not able to work when Lyric is in the hospital, and when he is out of the hospital, he needs 24-7 care.  Your support means so much. Seriously-Thank you. We need all the support and prayers we can get for our little Angel, Lyric.   ❤️

After 8 long days in the hospital, multiple tests, pain, open wounds, multiple medications, sleepless nights and tears of anguish, Lyric was finally well enough to go home.  

His neutrophils are too low to start Phase 4, but it will start soon enough.  

Thank you all for your continued support, love and assistance and for following our journey.  We thank you!  It means more than words can say!!  

Lyric was admitted into the hospital again on Friday. He is in excruciating pain. He’s had non stop runny stools for almost a month now. His butt just doesn’t even have a chance to heal no matter what we do. 

 We’ve been on and off talking with doctors that whole time, and it did feel like it was getting brushed off because he hasn’t had any fevers. So now we’re to the point where his pain is just out of control. I’m not exaggerating. All day, all night runny stool. We’ve barely slept. His butt is so sore. It also seems like he’s having pain when urinating or pain somewhere other than his butt and he just doesn’t know how to tell us that. 

 So far all urine, stool, and blood tests don’t show anything abnormal, except he does have elevated liver numbers, which the doctor today noticed that happened also back in May. So they’re going to keep an eye on that. Doesn’t seem like that has anything to do with the issues he’s having now though. 

 They’re working with GI specialist and they need to do more stool tests, but the nurse and I agreed tonight that he needs a break, so we gave him something to hopefully stop the runny stool for a bit and wait to get another stool sample for further tests. He’s on a strict pain med regimen and it is doing absolutely nothing for his pain. 

 It is the absolute worst feeling in the world to listen to your 4 year old son scream in pain and yell “help me!”. This is crazy. I don’t know what else to say about it!! He can’t catch a break. It’s the most horrible feeling!

Will update again at a later time…. I’m hoping we can get some answers as to what is going on.

Please send prayers and thoughts for Lyric, and for his medical team to find answers and also find a way to manage his pain better. Thank you all for your continued support.  God knows, we need it!!❤️

From Lyrics Mama, Amanda:

We sincerely apologize for all of those who are following Lyrics journey and waiting for updates. I’m not gonna lie, I’ve been having some extreme anxiety issues, along with other things and have been struggling with even leaving my house. We have been dealing with a lot of issues like that and trauma; it has been a rough few weeks. The more extreme stuff started after Lyrics complications during his last hospital stay. Working on taking care of that. ❤️

Currently Lyric is in phase 3 of treatment. In general, he is doing okay right now. He isn’t eating much, but the overnight feedings through his NG tube are going okay and keeping his weight stable/giving him the nutrients that he needs. We’ve had to adjust that as time goes on, but overall doing what it’s meant to do. He is walking well, getting stronger all the time. It is not his baseline walk, but he’s determined to move and get faster, which he does do a fast power walk when he’s excited and it is the cutest thing ever. ❤️ He still is not fully potty trained again, and I suspect that won’t be fully back for him until at least the final phase of treatment. He has been having some nausea, but able to manage with medications etc.

His energy is low through most of the day time, but has spurts of energy throughout the day where he plays with us and his brother for 10-20 minutes, then gets wiped out and lays back down for a while. In general, his usual personality is there though. He’s so sweet and so hilarious and goofy. ❤️ He says “I love you so much” all the time, verbally expresses worry about us if he knows something is wrong, uses some minor swear words and thinks it’s funny, but currently as long as he doesn’t use them in a disrespectful way, he can say whatever he wants. It is a good comic relief for all of us to be honest. Lol

He is amazing, determined, strong, and going through so much… it’s hard to fathom that he can still smile and be kind and play after all he goes through. Ever since his last hospitalization, his regular visits for chemo have been more of a struggle. He’s been through a lot of trauma and I think he’s terrified that everything is going to hurt, and that he will have to stay there. Hopefully he can get back to a point where he knows the visits are just a few hours, then he gets to leave and do whatever until the next time, and that not every procedure is extreme.  

Phase 3 is supposed to be a more restful period-enough chemo to keep the cancer cells away, but not generally enough to wipe out all of his cell counts. However, the main chemo drug that he is getting is the one they think caused toxicity for him. (That was unfortunately never a for sure thing, it was basically they ruled out everything else that could have caused his complications, so toxicity is what they think happened.) So, this phase he gets that chemo around every 10 days, each time increasing the dose as long as his body tolerates it. He is on extra meds to hopefully help prevent toxicity complications from happening again. As I’m sure you can imagine, that is extremely unsettling for us, but this particular chemo drug raises the survival rate by a significant amount, so they can’t not give it to him. It’s disheartening to accept, that we put him through this, or he doesn’t survive. This phase will last around 2 months.

Around August/September he will start phase 4, which will be similar to phase 1 in the sense that it will be intense treatment again, and will probably wipe his cell counts out, and will greatly increase his chances of being delayed in treatment/hospitalized again. That phase is also around 2 months, after that, will be the final phase which will last the rest of his treatment (around 1 1/2 years at that point.)

So, thank you all for continued support, thoughts, prayers, assistance with covering work… everything. It is appreciated more now than ever. I feel like I had more to say but my brains tapped out. ❤️

Last Monday our baby Lyric started Phase 3 of chemo for this horrific childhood disease. Despite the chemo, the spinal taps, the blood work, the liquid nutrition feedings (because he cannot eat), he still manages to smile and play like a little normal 4 year old.  

As awful as the nutritional feedings sound (liquid through his tube in his nose at night), it has helped him gain a little weight back, which is so good to see, because he was so frail. He is continuing to re-learn to walk again.  

This round of chemo last 2 months. It is treatment every 10 days in the hospital. The next one will be this Thursday. The bad part is they increase chemo intensity each time. Then, in August, he will start phase 4. Phase 4 will be rough as it is a repeat of Phase 1, which was very intense and will knock his levels way down again. One step at a time.

Thanks for the prayers and well wishes. They are appreciated beyond measure.

Lastly, cancer is tough on the people who love them. Being a parent and a caregiver of a sick child (or any sick loved one) is traumatic. This experience has taken a toll on them. So, prayers for their strength as well!

God bless you all.❤️❤️‍🩹

Thank you all for following Lyric’s progress.  We just wanted to share some fantastic news, Lyric’s fever went down and his counts are coming back up. After 13 long, frightening and difficult days, they released him from the hospital Thursday.  While he is exhausted, he is so happy to be home.

We couldn’t think of a better Mother’s Day present 💝 !

Thank you all for praying for him,  your thoughts and well wishes and donations and support! It is helping!!!  Happy Mother’s Day!

Today marks day 10 of Lyric being back in the hospital. While he has been thankfully transported out of the PICU, his temperature continues to spike. The doctors have run numerous tests on him, and cannot determine the cause. He is being treated with antibiotics, but his white blood count is not rising. This is what helps stave off infections and illness.  

He has multiple things going on. There is adenovirus, which was a small amount in his blood, but now seems to be undetectable as of yesterday. But, the more frequent fevers and higher temps recently is of concern, and they are covering him with antibiotics and anti fungal medicines. They have switched up antibiotics and his normal anti fungal they are switching today.  

The ran a bunch of tests and no bacterial or fungal infections so far were found. He also has cdiff which he got from the hospital, which we knew since Wednesday. We are hearing that because of the Cdiff, he must get isolated for 3 months for that, even if their symptoms are completely gone because it’s so contagious. Cdiff happened bc of the antibiotics he got put on to cover anything bacterial. This is not to say he’ll be in hospital that long, but basically he can’t even leave the room while he is here.  

The MRI they did on wed showed a couple small spots on the lining of his brain, which could indicate infection, possible meningitis, but they’ve run all different types of tests- including the spinal tap which were all negative for anything. The spots in the lining of his brain could be PRES, Which would be the toxicity from either of the 2 specific chemos that he gets throughout treatment, but they want to make sure there isn’t anything bacterial or fungal bc he still doesn’t have any white blood cells.   

The fevers are completely separate from the seizures. So, they aren’t entirely sure what is going on, but they know there are several things going on. Yesterday he started interacting slightly more since the seizures happened, but still definitely an “altered mental status” or not at his baseline. Still spiking higher fevers almost every single time the Tylenol wears off.   

The hospital hooked him up with a game and TV to try to help him occupy his time. He consistently says - every couple hours, “I want to go home!” To say there is stress on all of us, would be an understatement.  It cannot be described.

Thanks for your continued prayers and for following his journey with us. ❤️‍🩹

The last two days have been the most freighting in this journey - a living nightmare. Lyric has been fighting hard. His this Moms are being as tough as they can, but this has been so hard on them. Lyric’s little body has been through so much.  

Wednesday he went unresponsive and they had to intubate Lyric. They sedated him. Numerous tests have been run to determine what is happening. They determined he had a series of seizures. He has had MRIs, blood tests, electrodes, transfusions, spinal taps and more. They have ruled out some things, and it is a waiting game on other tests and Lyric’s response to treatments. 

Last night they were able to remove the tube and he woke up. We cannot tell you how much of a huge relief and big win this was. It’s difficult to explain the feeling. So much to go yet, but we are so thankful he is awake. I can’t tell you how long the last two days have been.

We are also thankful for the prayers and positive thoughts. It means so much to the family. Please continue to pray for him! He has a long journey.

Lyrics first words upon waking up were - I want my tablet, my pacey (pacifier) and I want to go home! We love that fight and determination! He is such a sweet boy. ❤️❤️‍🩹

Journal entry by Amanda Schmitt — May 1, 2023

Just wanted to write a quick update since I’m struggling to sleep. The first 6-9 months will be up and down, and things can change very rapidly. Lyric had a rough week-a lot of chemo for this second half of phase 2 and it brought all of his counts way down. He is neutropenic, which means his body can’t fight infection on its own right now. 

 He went to the ER Saturday afternoon, as Friday and Saturday morning he was barely awake and ended up spiking a fever (always a medical emergency for him during treatment). He was of course admitted into the children’s hospital Saturday evening. He was transfused with blood and platelets again (just transfused for both this past Wednesday too). Heart rate was very high and finally came down a bit on Sunday. He has some random respiratory virus-receiving antibiotics and fluids for dehydration. He’s not really eating or drinking currently. He will have to have nutrition through his nose tube for now.

Saturday was rough, Sunday also rough but we did see some smiles and playfulness from him at times. He hasn’t walked in the last few days, since he has been in the hospital.  That always scares us as we watch him lose his ability to walk/stand again - and he was just starting to rebuild those muscles. His fevers are up and down.  Every time he spikes a fever, we have to wait another 48 hours in the hospital.  Lots of different tests being done/watching cultures for any slow growing bacteria and checking to see if the virus has spread into the blood so they can treat it if it is.  He’s not sleeping very much-just all around doesn’t feel good.  He spiked a fever Monday, so we will be staying for at least two more days. Since he has a chemo treatment on Thursday, we may have to stay until after then.  There is so much stress on us right now.

Lyric absolutely hates being at the hospital (can’t blame him-so appreciative of the staff but this place is no fun in general for the circumstances, and it’s hard to rest here). Special thanks though to the amazing nurses and doctors as always for trying to make Lyric as comfortable as possible and get him feeling better safely.  

Also a special thank you to the family and friends who were able to step in last minute to help with Matix, covering shifts for work, and bringing us food at the hospital-you all are appreciated beyond words. ❤️

And as always a huge shout out to EVERYONE who has sent well wishes, thoughts, prayers, gifts for Lyric, donating money, providing meals, watching Matix… everything. It’s amazing and humbling how caring you all are to us, and words will never amount to the gratitude that we have for all of you as we make our way through this challenging chapter of life.

Lastly, this sucks. It just sucks completely. Watching Lyric go through all of this is incredibly hard, especially on the bad days. My mom recently posted pictures of Lyric pre-cancer on a Facebook update, and that boy in those pictures is unrecognizable to me now. That’s heartbreaking. This is our new normal-this is who Lyric is right now, this is who we are right now, and it completely consumes everything. It’s extremely hard, yet routine, and that is so hard to explain! I’ve said it before but I’ll just say it again-it’s having days where everything is going smoothly and things are light-hearted, to having days where we can’t even figure out how we’re getting by.

I daydream of the day that Lyric will get to ring the bell-cancer free and done with treatment. That is a long road to get to that point, but I try to keep that as a light at the end of the long, seemingly never ending tunnel. Also, just randomly, they told us in the beginning not to beat ourselves up too much when these things come up… but you can’t imagine the guilt of feeling like we could’ve done more or sooner. They told us you can do everything perfect, and he can still end up being hospitalized at times-it’s just the name of the game and it’s sucks. I’m sorry, one more time- THIS SUCKS! And of course that’s putting it very lightly. 

That is all for now-think I’ve exhausted myself enough to sleep finally from all the recounting and writing. Thank you all who follow Lyrics journey and kindly offer support in all the ways. You guys are truly doing life changing work with every thoughtful gesture to help us, and most importantly LYRIC get through this. Until next time… ❤️❤️

Today was another round of chemo and platelets.  This cancer and treatment is so difficult.  Lyric doesn’t move much, can barely eat, is nauseated constantly and whimpers in discomfort all day. It’s heartbreaking, and it takes a toll the more days that pass.  

Thank you for your continued support, prayers and encouragement.  Follow  Lyrics progress at:

https://www.caringbridge.org/visit/lyricsfight/journal 

We want everyone to know how overwhelmingly beautiful it has been to receive so much support from all of you already.  It has been completely humbling during this difficult time.