Levi's Legion

06/02/2026

June 2, 2026

Tomorrow, Levi takes on Washington DC to meet with senators and representatives to advocate for pediatric medicine and Medicaid for children - two things we happen to have a LOT of experience with! We are so honored to be attending with Akron Children's and to be able to tell Levi's story on an even bigger stage! Never in a million years did I expect in 2026 that Levi would go viral, be on national news and lobby on Capitol Hill 😳. What a wild ride!

I also realized that since his med port came out a few weeks ago, I've been quiet. May was pretty chaotic for us as we navigated sudden unemployment with Spirit liquidating and trying to scramble to get health care for everyone and Branden preparing for the job market. The airline industry isn't the quickest at hiring and honestly, we would be lucky if he's flying by the end of the year. He has applications in but there are multiple rounds of applications and testing to even get to the actual interview so he's working through that currently. He keeps reminding me of our mantra, "one day at a time."

On the Levi front, he's doing great. His med port procedure went as planned and his sinus wash went well with no other surgeries needed there which is an answer to prayer. We signed a waiver to be able to keep "Bob" the medport, so Levi has been VERY excited to tote him around in a specimen cup and show him to anyone who might be interested. Bob also DEFINITELY went to school. Sorry, teachers! 🙈

Levi also graduated from Elementary School and we attended his awards ceremony which he did a really good job at sitting through without an adult next to him. He truly has some of the best classmates that waited for him to make sure he got back to his seat and reminded him what to do. He also loved another clap out for the 5th grade class and since he brought up the year, the whole school chanted just for him which he if course loved. He's actually really excited to go to middle school and our district has come up with an amazing plan to set him up for the most success next year that we are all really excited about!

On Sunday, Levi got to attend his first youth group at church and man, I think that was the craziest of all for me. He's always been on the shorter side thanks to that extra chromosome but man, he looks so tiny hanging out with the middle and high schoolers 😭. He absolutely LOVED youth group and is so excited to go back on Sundays. Lots of friends from school came up to him and found him plus he introduced himself to a bunch of kids too. It's so nice seeing him be a kid again although where did time go?!? I'm definitely not old enough to have a middle schooler, right? RIGHT?!?! (*cries in 39 yo...*).

I think that's it for the moment. The littles are currently happily hanging with Grammy and Bop for the next few days and ready for their own adventures - I doubt they'll miss us too much. The littles really are "best buddies" as Boyd says so as long as they're together, they're typically happy...well except sometimes Boyd IS a little brother and Graham gets annoyed or bossy 🤣. I'll have to eventually make a post just about them because they are at such fun ages right now. Boyd just finished his first year of preschool and was definitely the kid on stage with the funny antics at his graduation program 🙈🤣. He's got a very dry, witty sense of humor and an insane vocabulary to go with it. Graham just finished kindergarten and LOVED it. He can't wait to go back to school already. He made so many friends and really came out of his shell. He's incredibly smart and outgoing and also has a funny sense of humor. He's really fun to talk to right now because he has a lot of great thoughts and questions.

I should go finish packing but I'll be sure to post throughout our trip over the next couple days!

05/16/2026

May 15, 2026

Happy birthday to the bravest boy I know! Levi is TWELVE 😳. Not sure how that happened because I'm definitely not old enough to have a 12 year old, right? RIGHT?!?

His actual birthday twelve years ago was a very dark day, one that took me a lot of years of therapy to be able to get through this day each year without a sting. I had had a feeling since I got the positive pregnancy test that the baby had Down syndrome and despite every test saying that I was wrong, I just knew and couldn't shake it. The fear gripped me my entire pregnancy so much that I didn't even tell Branden for fear that it would be true. His birth day was pretty traumatic and ended in a C-section followed immediately by his diagnosis. I don't remember much after that (drugs are not nice to me) other than waking up occasionally to vomit until the nurses came in that night to tell us Levi had coded and was currently in the NICU. From there we spent two weeks in the NICU where we learned he would need open heart surgery and learned how to feed our baby with an ng tube. It was terrifying and the future felt bleak. Not exactly the way I pictured starting parenthood.

Over the next several years, we honestly considered NOT having more kids not because we were afraid of having another child with Down syndrome but because Levi was the easiest, coolest kid and we didn't really want to rock the boat (enter: Graham. He rocked the boat. IYKYK 😜). From day one he has captivated people and loved people in a way I will never understand. He has always been the life of the party and typically is just happy to be a part of the party. He loves life and really makes us better people.

Today we are thankful for a new year of Levi, free of cancer. He was nine when he was diagnosed so it feels good knowing that after nearly three years, his 12th year could be the year he is just a kid again before becoming a teen. He is incredibly resilient and brave. ❤️

Today, Levi was so excited to wake up to balloons and an army of aliens downstairs - he's insisted on the same Pizza Planet birthday party for six years and counting 🤣. He was then excited to attend school on his birthday, especially because it was a field trip day to Stan Hywett where he had a lot of fun. Then his favorite part, a birthday party at Que Pasa with some of his favorite people. On Sunday he asked for ANOTHER party at his house so we are having family over and having cake, per usual. Low key, but a perfect celebration for our sweet boy.

We are praying that year 12 is uneventful and that Levi falls right back into being a regular kid again.

Happy birthday, sweet boy. We are so grateful for you ❤️

05/11/2026

May 11, 2026

Today marks the final big milestone in Levi's cancer journey: Bob, the medport, is being evicted! He is SO EXCITED and has been bouncing off the walls with joy. He popped out of bed at 5 am like a jack in the box rearing to go, complete with his signature panda costume. This sweet boy wants to "swim in the sea," swim at the drop off at Torch Lake, play in the creek and eat Dad's BBQ off of the offset smoker. And I'm looking forward to telling him YES! for the first time in years 😭

In true Levi fashion, he's the first patient to break in the new OR at Akron Children's but thankfully we are still getting to see familiar faces!

Today comes with a lot of emotions. For one, it marks our final farewell to 5600- our beloved oncology unit. Anytime Levi needs hospitalized from here on out, he will go to what I refer to as gen-pop, the regular med-surg floors that we all hate. The staff on 5600 are our people and while I'm obviously so grateful to be putting cancer behind us, there's a tinge of grief.

The other emotion we are experiencing is stress 🙈. I'm only sharing this part out of a necessity for prayer, not for pity. We are okay, but many of you know that Branden worked for Spirit Airlines which sadly went under on 5/2 in no small thanks to sudden insane spike in fuel costs. They had been struggling for awhile but we were hopeful that they we going to be exiting bankruptcy soon until the war started. We had decided to ride it out because Branden had been there almost 10 years and we honestly liked Spirit - they were really good to us the last few years. The risk unfortunately did not pay off and now Branden is working his butt off looking for a new job. The aviation industry is a wild place and it's been pretty stressful as we try to navigate getting all of his paperwork together, unemployment and insurance. Oh my gosh, the insurance. Right now, United Healthcare says we still have coverage as of Friday. It's still showing active this morning at the hospital BUT they can't guarantee us that it won't be retroactively terminated to 5/2. We can't self terminate because it's an employer-sponsored plan and the ghosts that are not at Spirit haven't terminated it and because we are still technically covered, we can't get Medicaid or COBRA (which holy crap, that is EXPENSIVE). So basically it's a hot mess so we are here rolling the dice and praying that we aren't left completely holding the bag. We thankfully have awesome social workers helping us out but man, it is STRESSFUL. We chose not to delay because his med port is no longer being used but because it's still in there, any fever over 100.4 requires a trip to the ER. That on top of the limitations of no fires and no untreated water for a kid who LOVES the outdoors right as we start heading into summer, it is time. It was supposed to be removed in April but Levi decided to take a final victory lap on 5600 with pneumonia which got us to today.

So yeah, it's been a lot over here again because instead of a midlife crisis, we've apparently just opted for constant crisis. To-may-to, To-mah-to. 🙃

We know that God has a plan but man (and I know I've said this a million times), we are tired. As Branden keeps constantly reminding me, one day at a time.

05/04/2026

May 4, 2026

One year. It's been one entire year since our sweet friend, Love Like Liam, met Jesus face to face. Man. What. A. Year.

Loosing Liam wrecked me in a way that I was not nearly prepared for- walking closely with one of my dearest friends through the darkest days of her life took my breath away. Childhood cancer is absolutely disgusting. It's not supposed to be this way, kids aren't supposed to die like this. The grief is often crushing. And helping my kids grieve? No thanks. I'm not interested in this road. Yet, here we are - in a sin-filled world that some days feels so incredibly dark. But God...

Even through all of the pain and questioning and anger, I know that Liam is with Jesus. He knew Jesus and was confident in where he was going. There's comfort in knowing that one day, we will see him again. We are so grateful for Liam and his family - walking hand in hand with them the last few years as we both faced childhood cancer head on helped bring some light to the dark valley we were in. Even though our time with him was short and ended in the way we dreaded, I'm still so thankful that he was a part of our lives and us a part of his.

This morning, Graham AND Levi both were upset and asking questions about Liam without even knowing what day it was - it's like their bodies feel the heaviness of today too. Levi has been really upset lately because he misses Liam so much and desperately wants him to come to Que Pasa with him for his birthday next week (we ate a LOT of Que Pasa with Liam 🤣). Grief is weird. One day you're totally fine and can smile about the memories and the next days those memories break your heart all over again. And helping kids through that process too is some days overwhelming.

So today we give ourselves some grace as we celebrate Liam's first heavenly "birthday" as I'm calling it for the kids. It's both a sad day because we miss him so much but a happy day because we know he's healed and happy with Jesus. I don't know that I'll ever not feel a tinge of anger about losing Liam, but I can choose to believe God has a plan. I might not like it, but there's a plan. And for today, that has to be enough.

We miss you so much, Buddy. We will make sure to eat some chips and dip for you ❤️

04/30/2026

April 30, 2026

It's been a minute but we are still here and still marveling at how viral Levi's story has gone. I knew that God would do something big with Levi's story and even though I've trudged through this season of life kicking and screaming the entire way, it's been nice to see a slight silver lining so soon. I think God knew I needed to be thrown a bone because if you've followed us for awhile, you know it's been dark. And while our personal lives are still like a bad joke most days (I'm looking at you, Spirit Airlines and our hot water heater that died today....and our flashing and shingles that recently blew off...I'll just stop there 🫠), it's been really nice to see some positives. Life has definitely been lifing over here.

I never expected when Levi rang his bell that our small town story would go nationwide being picked up by NBC Nightly News with Tom Llamas, People, Inside Edition and beyond. His story has literally been views hundreds of thousands of times across the country. I figured that we'd had our 5 minutes of fame and that was it but we received a pretty exciting call last week that puts us on a pretty big stage for sharing Levi's story 😳. Branden, Levi and I have been invited to accompany the government affairs team from Akron Children's to Capitol Hill in Washington DC to advocate for the importance of quality children's hospitals and Medicaid for children in the United States. We will be meeting politicians and attending a national conference with the Children's Hospital Association in June with other families and hospitals not just from Ohio but across the nation. We are so excited and honored to be able to represent Akron Children's at this event and to advocate for all children. I never expected that Levi's diagnosis would put us on a NATIONAL stage but man, if there's ever a kid who's story deserves to be shared, Levi feels like a pretty awesome candidate. He absolutely makes me want to pull my hair out some days (oh 12 yo boys 🙃) but my goodness, he's a really cool kid that is doing some really amazing things. I have no doubt he will charm the pants off of everyone he meets in D.C.....aaaaaaaand will absolutely mention his love for Michael Jackson, offer to moonwalk and nonchalantly tell people his best friend is dead 🤦‍♀️. Maybe I should make some bingo cards with Levi-isms for the trip 🙈🤣

So stay tuned. What started off as his Buddy Walk for Down Syndrome team then became his cancer-fighting village name, Levi's Legion is morphing yet again. God is good (and yes, I'm still salty about how we got here but I'm working on it. Just keeping it real over here 😉).

Oh, and please pray that the man of the hour/day/month/year stays healthy the next 10ish days. His rescheduled port removal date is now May 11 and we REALLY need this date to stick. He's had a perpetual sinus infection for nearly six months and a CT scan confirmed it's never actually fully resolving so they are going to do a sinus wash while he's under as well so we can hopefully get him on the upswing. If he gets sick again (stupid allergy season), the date will get push to June which really starts getting close to our summer vacations and he is going to be big time angry if he can't swim in the ocean or Torch Lake for the third summer 😬. He has been so looking forward to these trips and being a regular kid again and I REALLY don't want to break his heart again. We'll keep ya posted!

Thanks for being the best village ❤️

04/01/2026

March 31, 2026

Y'all. Did you catch Levi on both People AND NBC Nightly News with Tom Llamas?!?! Holy cow, what a day! We knew he was going to be on NBC but not until the weekend because we don't have our interview until tomorrow but we were shocked to see Tom Llamas feature him today!

While I'm still pretty salty about the last 2.5 years, it's not lost on me how far Levi's story has traveled and that God is using it for His glory. I knew that would be the case but I definitely have been kicking and screaming most of the time. But man, what a wild experience. I never could have imagined that Levi would be on the NATIONAL stage and the age of 11 but also, this feels very on brand for him 🤣. I guess we should quit calling him Wayne County Famous and now call him Mr. Worldwide 🤣🤣🤣

https://www.nbcnews.com/nightly-news/video/school-surprises-11-year-old-cancer-survivor-with-clap-out-260474437645?fbclid=IwY2xjawQ5YsdleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR7069LONvfl1aTWp0vbc6fsV1ySjC75Plv99i5ksg47S56Fb5k5v1TtlXwWbQ_aem_LQk3t6qfn0jupPVX0C5Qpw

03/29/2026

March 29, 2026

Palm Sunday edition and Levi got the boot! He's still pretty j***y but all the junk is breaking up and his coughing is pretty productive so they were comfortable sending him home with the hope that as he moves around more, he'll continue to clear his lungs. His brothers are anxiously waiting for his return so he can play Mario Kart on the Hot Wheels track with them!

While waiting to get discharge papers, he was out of bed doing his best MJ moves to Thriller so I'd say he's feeling a bit better! 🙈

Over on the homefront, Boyd woke up screaming in the middle of the night from a bad dream and I discovered he was running a fever 🫠. He seems fine this morning but that meant no church for the rest of us so we are keeping the final day of spring break pretty low key.

Thank you for praying for us. Levi's not entirely out of the woods yet and this unfortunately will delay his med port removal a bit but we are thankful he had a relatively quick stay that was pretty uneventful for him. I guess he really did just need a victory lap with some of his favorite people. Thanks, kid. 🙈

03/28/2026

March 28, 2026

Another day, another hospital stay.

Not much to update today. Levi got a boost of IVIG over night and held remarkably steady without respiratory support which is a sigh of relief as this is his first bout of pneumonia since ditching his BiPAP. Branden and I were a little nervous that he would need support but he's gotten so much stronger in just the last couple months alone that he's doing okay. That said, if you've been here a minute, you know Levi likes to dabble in the shenanigans so no one is in a rush to kick him out of ACH so he's there for at least another night. His blood cultures didn't grow anything sinister thankfully so he was able to be moved from IV cephapime to an oral antibiotic to help fight the bacterial part of what's getting him down. Hopefully combined with an immune system boost from IVIG, he should start improving slowly. He also has thrush from the antibiotics he JUST finished and some weird fungal situation on his toes. Go big or go home, kid 🙄

I'm currently staying home with the littles to salvage a tiny bit of what's left of our spring break staycation where we each chose an activity and a meal that we wanted over spring break. We aren't going to get it finished at this point but we promised the kids we'd leave the lists on the wall until we finish them all which they were thankfully gracious about. Unfortunately the littles are no stranger to plans being tentative until we are actually doing them so while they were understandably disappointed, they also understood. The three of us went to our church's annual helicopter egg drop this morning in the freezing snow and plan on staying in to snuggle and watch movies the rest of the day while Levi and Branden continue their "boys weekend" 🤣.

PLEASE continue to pray for Levi's healing and for us to all be home together soon. You may be thinking, wow that's really great Branden was home during this and while you are correct, it IS nice, he's also been home since before Christmas 🙃. I've loved having him here but he's been off work because he ruptured his ear drum at work the week before Christmas and STILL hasn't been able to return to work. His ear drum is healed but it's been a logistical nightmare trying to get his medical license back, insurance handled, correct diagnosis, etc. The aviation industry is a wild place that feels like level 40 of Super Mario Brothers to bounce through. So much red tape, paperwork and appointments 🙄. One day he'll go back again and while we'll miss him terribly (especially me- having two adults in the house every day is AWESOME lol) we also very much need him to work. Mama ain't cut out to go back to corporate IT 🤣🤣🤣

One day at a time.

03/28/2026

March 27, 2026

After the feel good story yesterday, Levi decided it was opposite day and decided to very much NOT feel good. He woke up with a 102.7 temp so Branden immediately rushed him to Akron Children's ER. We had hoped that maybe a round of IV antibiotics would do the trick and it would be a day trip but alas, dude decided to do a victory lap before he gets his med port removed in less than two weeks. We are currently admitted on his beloved hem/onc floor with bacterial pneumonia plus a couple different viruses including his kryptonite, rhino/entero. 🫠

When I came to bring supplies, he told me he is sick and that he's "stuck here" but I'm finding it hard to believe he's really that mad because he definitely said "JACKPOT!" when they told him he was going to the floor 🙄🤦‍♀️

So here we are, post chemo, post bell ringing living the same life we've been living the last 864 days. I'm not sure at what point we will feel like maybe this is behind us but it's certainly not today or anytime soon as we deal with the emotions that surface being back here. Even though Levi is in good spirits, my body feels a sense of heaviness that I didn't realize I hadn't been feeling as much lately. Praise God for therapy.

So please pray for a quick stay and healing. And when we get out of here, we have something VERY exciting to share. Let's just say I got a call today from a NATIONAL news outlet.... 😳

Until then, one day at a time.

03/26/2026

Oh hey, we know him!

Thank you so much to Lindsay Buckingham for featuring the sweetest story about our amazing boy ❤️. We really enjoyed visiting the studio today and getting a chance to share about our village!

Levi Buxman spent more than two years battling acute lymphoblastic leukemia — and his community made sure he knew he was never alone.