Levi's Legion

02/19/2026

February 18, 2026

The last couple weeks have brought about a lot of changes on the medical front for Levi - all positive. Its been wild but first he went to Sleep Medicine to follow up on the results of his sleep study in November. I had read the doctor's notes and was pretty sure I understood the results but didn't want to jinx it so I didn't say anything. We had thought since the fall that Levi's BiPAP settings probably needed changed because he was fighting us a lot more on leaving it on which he didn't normally do unless it was bugging him (stronger than a CPAP basically because his apnea he was diagnosed with pretty early in treatment was so severe). Well, my interpretation of the pathology report was correct because holy cow, but they don't even consider him to have mild apnea anymore so ADIOS breathing machines. I honestly never thought this would ever happen for him because apnea is very common in people with Down syndrome due to typically smaller, floppier airways. Given his history of respiratory shenanigans, I figured he might move down to a CPAP but that it would always be a part of his life. But God.

Then we went to endocrinology two days later and found out that since his labs have all looked good and his blood glucose numbers haven't done anything wild in at least six months, we were kicked out. We just have to have labs run annually by his pediatrician (we have every year since birth because thyroid problems are common in people with Down syndrome and his mother doesn't exactly have an appropriately functioning endocrine system). I didn't expect this one either, but here we are. Down another specialist.

Last Wednesday we went to the oncology clinic for Levi's FINAL lumbar puncture for intrathecal chemo (more on that in a minute). Our oncologist told us she spoke with neurology and that we could begin tapering off his anti-seizure meds and that neuro didn't need to see us anymore either. He went from having a decently massive stroke followed by PRES nine months after that and then being intubated 15 months after that to not even needing to be followed by neuro. What is even happening?? Its almost all so overwhelming in a weird way. Like we are coming to the end of the chemo train ride and our people are starting to get off the train ahead of us. Basically, I still have a lot of feelings. What else is new?

So back to the LP. Branden and I were both able to attend because we knew that it was something to celebrate and celebration it was! I don't think we stopped talking to hospital staff the entire time we were there because it was just a revolving door of staff coming in to congratulate all of us and give lots of hugs. The marketing team for the hospital even followed Levi around for the day filming and photographing everything including scrubbing in to the OR to document him singing himself to sleep singing Thriller while dressed as a Panda (his costumes to the OR have become a thing over the last year or two and are quite the hit). Even in the waiting room, our favorite patient transporter saw our name on the board and came out to congratulate us. An anesthesiologist that loves Levi but wasn't even assigned to his case that day even decided to scrub in because he just wanted to be a part of the LAST LP. And that's just the tip of the iceberg. Honestly, I'm choking up just typing this. The staff at Akron Children's have been nothing short of incredible and we are so grateful how much they love our sweet boy. These are the kind of people you want in your corner; they are forever part of our village.

The LP was over and done with without a hitch but not without a dose of steroids that knocked him on his rear for the long weekend but he went back to school Tuesday as happy as a clam and counting down the days until his bell ringing.

His bell ringing. Holy cow.

We made a comment last week that we weren't sure how many people were going to attend that it could be small and the staff laughed and said that it was definitely NOT be small just because of hospital staff alone. Like, they're considering moving it down by the ball machine in the atrium because they're pretty sure the typical hallway outside of the clinic won't be big enough. Cue the tears. So if you're considering coming, please know you are more than welcome.

THE DETAILS: I'm thinking looking at the clinic timeline for that day that it should be around 1PM on March 13. We might also be streaming it as well for Levi's school so I'll share those details if that's a route we go. There's still about a week or so left to order a bell ringing shirt (certainly not a requirement - our family is wearing them and wanted to give others the opportunity if they wanted). All proceeds for the shirts will go directly to the Showers Family Center for Childhood Cancer at Akron Children's and I can assure you that its a good cause. After nearly 270 nights there, we are so grateful for all they do for patients and their families.

I think that's it for now. Kicked out of three specialists, got his last lumbar puncture, talked bell ringing and Mom is still an emotional basket case. Sounds like that covers it.

https://www.etsy.com/shop/GoodFeelsShirts?ref=yr_purchases§ion_id=44182110

01/29/2026

January 29, 2026

I started writing this update a week ago and then Facebook deleted it and the kids have been home for 1758474298 days in a row and listen, we are not thriving over here 🙈. We are still going through the ringer over here between sickness and uncertainty around Branden's job because why not? I'll just leave it at that because it's a lot and this last week has been heavy for our extended family.

On to the real point of this post...end of treatment 😬

We officially have Levi's end of treatment and bell ringing date on the calendar - March 13, 2026. We would LOVE to have anyone who would like to attend to join us- he wants a big celebration! If you've never attended a bell ringing, it's a big deal for kids and if you have any feelings at all, you will probably cry. It's a beautiful celebration with music and cheering and dancing. Please do not feel like you don't deserve to be there if you want to attend - if you have prayed for us, followed us, and/or helped us, you are welcome to come! More information to follow on exact time on 3/13 but it will be in Akron Children's main campus.

We are doing shirts for Levi's bell ringing that coordinate with the shirt my sister designed for him to wear. You absolutely don't need to purchase a shirt but if you do, please know that all proceeds will be donated to the Showers Family Center for Childhood Cancers (the oncology unit at Akron Children's). They have been so amazing to our family and this is just one way to hope to give back.

If you're interested in a shirt, my sister put them in her Etsy shop and plan to wear them to his bell ringing!

https://www.etsy.com/shop/GoodFeelsShirts?ref=shop-header-name&listing_id=4439944816&from_page=listing§ion_id=44182110

Once the weather is warm and our pool is no longer a block of ice, we will be having what Levi had deemed his "meat party." Levi hasn't been able to eat any BBQ cooked with firewood while on chemo because of his compromised immune system and the risk of fungal spores so he wants to throw a giant party with all with all his BBQ favorites! This is where everyone really is invited to an open house party as a celebration and a thank you to our incredible community that has come along side us the last 2.5 years. We are hoping to nail down a date soon so stay tuned and PLEASE plan to join us!

Shop Tessa Brediger-Lambert by GoodFeelsShirts located in Dayton, Ohio.

12/25/2025

Christmas Day Update:

Well Levi's cryptonite has struck again (or honestly, probably never stops striking, it just ebbs and flows) - stupid rhino/entero PLUS norovirus. Yes, we allllllll had it last week. Good times.

After IV antibiotics and lots of testing to make sure we haven't missed anything, Levi and Branden finally made it home a little after two this afternoon to be greeted by two VERY excited little brothers who had been waiting pretty patiently to open presents until we were all together.

Levi is clearly exhausted but was happy that he got to go to the floor instead of sitting in the ER where he got to see his favorite nurse and got showered with presents including a DJ turntable 🫠 (thaaaaaaanks, Miss Maddie 🙃). We are just happy that even though delayed, we at least are all currently relaxing at home in our jammies TOGETHER.

The day obviously did not go as planned at all but we are thankful for the prayers and the quick (all things considered) trip that didn't completely wreck us for yet a THIRD Christmas.

Here's to maybe a healthier 2026? I mean, one could hope, right?? RIGHT?!?!

In the words of Clark Griswold, "HALLELUJAH! HOOOOLY S**T! Where's the Tylenol?!?"

Merry Christmas to all and to all a good night. 🫠

12/25/2025

December 25, 2025

Another Christmas in the Trenches. Round 3. 🫠

I haven't posted much lately not because there hasn't been much to share but more because the last month has been ROUGH. From a cancer standpoint, Levi is fine but the viral illnesses visiting this house? Not so fine. Levi even spent a few days at Chez ACH a few weeks ago with pneumonia. It's just been a lot.

All that to say, I woke up to Levi coughing around 5:30 this morning. I got him some water and decided to take his temp. It was 100.4 so the timer started on the one hour monitoring. Well less than 30 minutes later, he was above the magic 101 number and we were given orders to bring him in immediately for antibiotics and he also needs IVIG so I guess we will get that done too and save us a trip in a couple days.

Branden is taking him up there so I can be with the littles when they wake up and try to salvage a bit of normalcy while we wait for Levi to HOPEFULLY be discharged. I honestly just can't believe this is happening again for a third year in a row. Like what on actual earth? I keep begging God for calmer seas but every time I feel like maybe I can come up for air, another wave crashes over me.

Please pray that after infusions, Levi can come home and we can have a quiet Christmas at home. Please pray for the littles as they are about to wake up to their brother and dad missing. And please pray for Branden and I. This month has been HARD and we are weary.

I pray that I'll have a "he's home" update soon. ❤️

Merry Christmas, village. Thanks for loving us.



Pictures from church yesterday - our first Christmas Eve service in YEARS.

11/06/2025

November 5, 2025.

Two years. 24 months. 104 weeks. 732 days.

SEVEN hundred and thirty two days. That's how long Levi has been fighting leukemia. That's how long its been since this nightmare started. On one hand, I'm flabbergasted at how fast time has seemed to move - our lives have often felt like they've been on hold since Levi's diagnosis. How has is been two years already? But then I talk to a friend or see kids I haven't seen in awhile and I'm jolted back to reality and how much time has passed. Everyone around us has continued moving forward and some days I feel like we're still in the same place. But also "Baby" Boyd who was 21 months old two years ago is an entire feral preschooler with a dry and witty sense of humor. Newly four year old Graham is now a crazy smart six year old in kindergarten. Neither kid really remembers a time clearly before cancer entered our lives. I remember but can't grapple with how long its been. Time is weird.

Levi is doing decent all things considered. He's still taking chemo daily and has two lumbar punctures left before his end of treatment date in March. Getting him reacclimated to school has been...interesting. He's (understandably) not had a lot of responsibilities the last two years and has been catered too (again, understandably) so he's struggling a bit with having to put forth effort at school. He has an amazing teacher this year though that's really pushing him to be his best and on the days that he decides to try, its going great. He's always been a stubborn nugget which is a blessing and curse.

In honor of it being two whole years since we entered this valley, I thought it was a good time for a Beads of Courage update. For those that are just joining us or have forgotten, Beads of Courage is a program that allows patients to earn beads for all things related to treatment. The beads Levi has earned in the last two years tell the story of his treatment and give us a harrowing visual of all that he’s been through. When we first starting tracking and collecting Levi’s beads, I told the child life specialist that this program was really for me because I was probably going to become obsessed with tracking and collecting for him. Well that was a VERY accurate prediction (if you’ve ever seen our “bead binder,” you know) but what I didn’t expect is that Levi would ALSO get into it. He has also really enjoyed collecting his beads and always demands to display them as a badge of honor on his IV poles. Last year when we unexpectedly wound up at Nationwide Children’s, he was mad at me because I didn’t bring his beads to hang from his pole. I'm sorry, I didn't pack for a hospital stay on our vacation. 🫠

So with that, I present Levi’s current bead count. Each color/type of bead represents a different part of treatment. Some are GROSSLY undercounted (like pokes, the max I ever counted was five per day because honestly, sometimes he was getting poked hourly and 24 black beads for one day felt…excessive) but they all together tell his story.

• BEIGE: bone marrow aspirate, biopsy – 11
• ORANGE: central line or midline placement or removal – 21
• WHITE: chemo (undercounted because it took me awhile to learn all the words) - 603…and counting
• BLUE: clinic visit – 81
• DARK GREEN: TPN, NPO – 113
• GRAY: dressing change, skin care – 315
• MAGENTA: emergency, unusual occurrence – 55
• LIGHT BLUE: eye exam, eye drops, mouth care related to treatment - 466
• GLASS STAR: general surgery – 7
• FACE BEAD: hair loss, hair growth – 4 (he lost his hair two separate times)
• LIME: isolation, fever, contact precautions, neutropenia – 226
• PURPLE: IV infusions (one per day) – 262
• YELLOW: overnight stay in hospital – 261
• BLACK: pokes (blood draw, port access, blood sugar testing, ect) – 942
• TORTOISE: procedures (lumbar puncture, wound care, scope) – 53
• GLOW IN THE DARK: echocardiogram – 6
• PINK: respiratory support, sedation, anesthesia, ventilator – 189
• SILVER STAR: suture removal – 2
• LIGHT GREEN: scans (x-ray, MRI, CT, EEG, ultrasound, etc.) – 106
• RAINBOW: therapy/support staff visit (PT, OT, Speech, Respiratory, Psych, Narrative Medicine) – 416 (also under counted)
• RED: transfusions, blood products – 57
• AQUA: NG tube, catheter placement/removal – 65
• HANDMADE GLASS: act of courage or treatment related milestone (like today’s anniversary) – 20
• SQUARE HEART: admission or transfer to PICU – 5
• BUMPY: medication or mobility challenges – 39
• CERAMIC SPECIAL SELECTION: special accomplishment – 19
• FISH: transfer facilities, “upstream battle” – 12
• MEMBER’S CHOICE: discharge from hospital – 15
• MISC CHARMS/BEADS: holidays, special therapies like art and music, special addition beads – 62

All said, my dude has 4,428 beads.

4,428 acts of fighting.

4,428 moments of bravery.

4,428 moments that kids shouldn’t have to experience. But Levi has, and often with a positive attitude. I’ve always said that of our three kids, Levi was the best one to have to walk down this road because he’s so resilient. Not that our other kids wouldn’t fight but Levi has handled these last two years often with a smile on his face. He has faced some DARK stuff like losing his best friend to cancer and going blind himself due to a rare side effect. He’s spent two Christmases in the hospital and still battles with sorting our delirium from reality from earlier this year. But here he is, alive and learning how to be a kid again.

March seems so close – like there’s a light at the end of the tunnel but for us, we wait with bated breath. Germ season is upon us and last Christmas’ dark turn still feels fresh. We are praying that he can stay out of the hospital and ESPECIALLY the PICU this winter. We’d really love to be home for Christmas. We’d really like to get to life on the other side of treatment without more battle scars. We can only rely on our faith to carry us to the finish line at this point because we are tired and weary. What a long, dark valley this has been. But God.

As I wrap up this LENGTHY update, “dear diary” session, Levi would also like to remind everyone that when this is all over, he is still SET on having a “meat party” to celebrate with everyone. He wants his dad to smoke all the Texas BBQ his heart desires and to party it up! So stay tuned for that because man, will it ever be a reason to celebrate!

Thanks for sticking with us and continuing to pray for us. It takes a village. ❤️

10/11/2025

October 10, 2025

Levi got to break free yesterday after only two nights... honestly, that might be his shortest admission ever on 5600. We thought we were going to get to come home after only one night but less than two hours before getting the boot, his oxygen saturation started hanging in the mid 80s for about 10-15 minutes while he was sitting up playing a video game so definitely wide awake 🙄. Was it a ploy to get to stay longer? I doubt he can control his pulse ox (obviously) but regardless, it worked 🤦‍♀️

He still sounds pretty j***y but he stayed stable for the next 24 hours so we got the boot again. He wasn't thrilled about leaving so soon but once he had a couple visitors to say goodbye, he was ready to hit the road. He's done okay today, just exhausted so we plan to lay low this weekend.

Thanks for the prayers and check-ins this week. We are happy to be home mostly unscathed ❤️

10/07/2025

October 7, 2025.

Well, well, well. What do we have here? 🫠

Tis the season for allergies and Levi's kryptonite, rhino/entero virus which decided to rear it's ugly head again on the form of pneumonia. Again.

We thought he was just having allergies the last several days because he and Boyd both had clear runny noses and post nasal drip-sounding coughs. We've been moving a LOT of dirt around in our yard lately due to his Wish plus we literally live in a corn field so we just assumed allergies were to blame until he woke up this morning for school with a 102.6 fever. Instant proceed to the hospital 🙄

A chest x-ray showed he has pneumonia and a respiratory film array confirmed our favorite virus was visiting again so he got admitted because let's be honest, no one trusts his respiratory system.

So we are back. And today feels just like the weather on d-day two years ago. And this situation today feels eerily similar to another one where things went sideways right down to the room we were in and me not arriving until later because I was managing my gray hair. It's all a lot of past trauma rearing. But also we are back in a place that is unfortunately VERY familiar. I instantly remember the number for room service, a number I probably couldn't have told you yesterday but I've dialed it probably over a thousand times and so it just comes back in the right environment. Names and faces I haven't seen in months flood back in and suddenly it's like we haven't really left which is strange because I felt like maybe I was healing?

It's also weird because this is our first time back here without knowing that Love Like Liam is likely going to join us because those two boys had the strangest connection. Or maybe God just knew their moms needed each other. I called her on the way here and asked her if she wanted me to pick her up for a sleepover and late night cheesecake factory in the teen room after the boys finally went to sleep. In a weird way, she was kind of jealous because as much as we hated why we were here, it's also kind of home in this season. And we missed our people.

So I'm not pumped to be here because you know, triggggggersssss, and I hope that Levi doesn't try to pull any Levi/Liam shenanigans but for a day or two, maybe it's okay to be home? We'll see how much therapy everyone needs when we leave 🫠🙃

How many days until we are done with cancer???

09/22/2025

September 22, 2025

It's Childhood Cancer Awareness Month and you probably didn't know it. Breast Cancer Awareness Month in October? HIGHLY publicized and everyone seems to "go pink," but in September, where is the gold for the children? I have a LOT to say about it but struggle with finding the words that don't make me fill with rage. I keep starting to make a post and then feel like what I have to say isn't articulated well because if you ask me about this topic in person, I'll probably word vomit a LOT of frustration and facts at you 🙈

Before I go on, research for breast cancer is OBVIOUSLY very important and I'm grateful that there is so much awareness and research happening for it...but what about the children? You might be appalled when you find out that only 4%...so $.04 of every dollar spent on cancer research is earmarked for ALL childhood cancers. Combined. All of them. This is MIND BOGGLING. And so incredibly frustrating.

The chemo that Levi receives? One was developed in 1947...you know, 78 years ago. He takes that weekly still. His daily chemo was developed in 1953. You get the idea here...there HAS to be something better for our kids. But when so little awareness and funding are given to childhood cancers, how can we expect to improve?

I hate this. Childhood Cancer shouldn't be a thing. But it is and these kids deserve better.

Please consider "Going Gold" this month. If you'd like some places to donate that will go directly to childhood cancer research, please let me know.

I'll leave you with some infographics. Please know that I don't hate breast cancer awareness month, I just hate the inequality. We need to do better.

08/27/2025

Childhood Cancer Awareness Month is coming up in September and what better way to show your support than wearing some Levi's Legion gear!

I've been hearing rumors that early sales have been arriving in mailboxes- show us whatcha got!

https://www.bonfire.com/store/levis-legion/?fbclid=IwQ0xDSwMb7dljbGNrAxvt0WV4dG4DYWVtAjExAAEes0BV_w6TJTuHeGcrWFCNAMTH70gwd9TZu-SDC6HUGa1hz7v1YBTfkmHy5Y0_aem_OKLpWS7nOV2IbGCssa9z6A

Diagnosed with B Cell Acute Lymphoblastic Leukemia on November 5, 2023. This is his journey.

08/19/2025

August 19, 2025

The first day of school.

I am not okay. This morning, I put my cancer fighting baby on a bus to school - back to the land of "normalcy" and germs. I fought back my tears as he so excitedly hopped on the bus this morning ready to see his friends, eat in the cafeteria and play at recess. I didn't want him to know how paralyzed I feel by fear. The last time he went to school around the holidays, he lasted five days before he ended up intubated in the ICU for a month. He should have been strong enough then- most kids with leukemia go back to school in the phase of treatment he's in but he's obviously not most kids. He scares me.

But God.

I am not in control though I desperately feel like I want to be at the moment. I want to know with confidence that we are all going to be okay. And we will be, I just don't know what the road looks like to get there...and that's scary.

What I CAN do is share my annual back to school PSA: Be Kind. Teach your children to be kind to those who are different from them. It costs you NOTHING to be the bigger person and to treat others the way you want to be treated. Teach your kids to talk to the kids that no one else will. Teach your kids that smiling and saying hi to kids that aren't their besties isn't uncool. Teach them to be different.

Every kid just wants to be seen and included, ESPECIALLY Levi. And yes, kids like Levi can be a lot. He has zero concept of violating personal space and will ABSOLUTELY sneak in a hug when he can. He's loud when he's excited and his dance moves are... something. But he loves big and wants to be everyone's friend.

I'm not saying to teach your kid to be besties with everyone because that's completely unrealistic. We don't have to be friends with everyone but we should all be kind. Teach your kids to say hi back to kids like Levi when he says hi. Compassion for another HUMAN goes a LONG way. We all want to be seen and included, including those who seem different. Levi is just like every other 11 year old 5th grader. He just happens to have an extra chromosome that often makes things a little harder for him. That doesn't make him unworthy of kindness, it just makes him human. We are all different and we all want to be seen.

Teach your kids to be kind. MODEL it to them. It starts with you as a parent. From human to human, its the right thing to do.

08/15/2025

August 15, 2025

Today is our bestie Love Like Liam's 8th birthday and our first one without him on earth. Eight year olds shouldn't have heavenly birthdays but we know he's with Jesus and cancer free so we know it's his best birthday yet as hard as it is for those of us he left here on earth.

Last year for Liam's birthday, both boys were of course admitted at ACH so we threw him a birthday party which was so fun! I'll share some pictures of that because it was so cute!

Please pray for Liam's family today as this is their first big "first" without their sweet boy.

But God.

08/07/2025

Did you get to tune in this morning to our radio debut? Levi was once again NOT shy about being behind a microphone! 🤣 Thanks for having us, Wishes Can Happen, MIX 94.1 and Java Joel!