Levi's Legacy DIPG Foundation

05/30/2026

Natalie passed away on the same day as Levi, just hours apart. 💔 Her mom Amanda is a treasured friend and advocate 🎗️ Go Gray in May for Nat, Levi, and all of our beautiful warriors and “angels” 🎗️

Go Gray in May! Meet Natalie! Natalie had just turned 15 years old when her life changed forever. On December 4th, 2018, she began experiencing difficulty walking and talking, along with a severe headache. What initially seemed like the flu quickly became much more serious. She was rushed to the ER in her hometown and then transferred by critical care team to Batson Children’s Hospital.
Upon arrival, Natalie was placed on a ventilator and underwent procedures to relieve fluid buildup on her brain. Doctors first suspected the flu, then meningitis, then encephalitis. Soon, they discovered a mass on her brain stem. Two days later, the devastating diagnosis was confirmed to be DIPG. The diagnosis came as a complete shock. Just one week earlier, Natalie had been an active teenager, enjoying life and riding her four-wheeler.
Natalie began radiation treatment, and her tumor remained stable without growth for months. However, she faced numerous complications, including kidney stones and a pseudomonas infection acquired during a hospital stay. Following kidney surgery, Natalie developed sepsis. Despite her incredible strength and determination, she lived only 30 days after the sepsis diagnosis. At that time, her tumor remained under control.
On October 11th, 2019, Natalie gained her wings at the age of 15 after a ten month fight.
She was less than a month away from turning 16💔

05/30/2026

Had a beautiful but hard day celebrating Levi’s 10th Birthday today. So exhausted so I’ll just post this pic tonight. Hope to share the rest of the day tomorrow.

05/29/2026

🎉🎉🎉50% Off EVERYTHING!! 🎉🎉🎉
Discount will automatically apply at Checkout! SHOP TILL YOU DROP!!
💙💚🐞HAPPY 10th BIRTHDAY LEVI!! 🐞💚💙

05/25/2026

Hi friends! Please share! Our restock sale is open now. You can make your garden beautiful and fight pediatric brain cancer at the same time!! 🎗️🐞🎗️ 25% off discount code is LIVELIKELEVI

RESTOCK OPEN NOW!! 25% discount code is LIVELIKELEVI
🎉🎉🎉

05/18/2026

Today, May 17th, is DIPG Awareness Day. We pray for the day that we don’t need an awareness day because there is there is a CURE for DIPG and all brain cancer! Till then we need to share and help people to know about DIPG because until enough people CARE we won’t find a CURE 🎗️🐞🎗️

05/02/2026

Our Dahlia tuber sale is open! It’s our biggest fundraiser of the year. 🎉🎉🎉 100% of profits go to support Levi’s Legacy DIPG Foundation.

WE ARE OPEN🎉🎉🎉
We didn’t quite get all the pictures in and we still have a few more things to add but we are open!

https://dahlias-4-dipg.myshopify.com

04/27/2026

❤️ Sweet Hazel update

I know its been quite a while since the last update. I was hesitant to post until I heard a "for sure" plan from the team. Leaving, NY, I was told we were done. Done with both chemo and immunotherapy.

However, late last week, her oncologist called and expressed that the team decided they actually want her to complete 2 rounds of JUST immunotherapy. This round, the week following mothers day, will be immunotherapy and a Brain MRI.

And then the next round would also be a full set of scans. If those come back the same or better, we will officially move to relapse prevention!!!

However, for now, we are DONE WITH CHEMOTHERAPY!!! 19 rounds of chemo in 14 months🥴. This is a HUGE milestone!🎉🎊

My girl gets to keep a functioning immune system, she gets to start growing hair, she is done with the toxic chemo that tears apart her digestive tract. 🥰🥰🥰.

Immunotherapy will still fight any disease that could be left in the body. However, it does not break the blood-brain barrier. The brain lesions are the most puzzling spots of disease. We just dont know their status. So these next few months will be SO SO important.

If you could smother my girlie in prayer, we would be so grateful. Please pray that God heals her fully...and That the spots of disease in her body are not active. Our God is a mighty God. 💜🩷. We are praising God for seeing her through so far.

We are so thankful to have you all walk this with us the last 14 months. Feels like alot longer than that🥴.

Otherwise, Hazel is eating well, still taking GTube feeds at night. She is slowly building strength. Hoping her walking will take off soon!

Hazel and her bubba, Silas. 🥰

04/03/2026

Sweet Hazel 💕

Eating well, and slowly gaining, it seems. Back to NYC soon.

Please keep praying for our girlie! Trying to manage some smaller but painful things (granulation tissue on her GTube site, and a gnarly diaper rash🥴). She is doing well though.

Next week is scan week plus chemo/immunotherapy!

Amazon wishlist: (still mostly just food gift cards and some clothes🤷‍♀️, but so so helpful! )
https://www.amazon.com/hz/wishlist/ls/ZLLSVPEUD8QA?ref_=wl_share

04/02/2026

Damned if You Do, Damned if You Don’t

I keep coming back to the same thought over and over again. No matter what you choose… it feels like the ending doesn’t change.

That’s the part of DIPG that people don’t understand unless they’re living it.

You can sit for hours, days, weeks. Researching.
Talking to doctors.
Reading every study.
Listening to every story.

And eventually you hit this wall that knocks the air out of you.

There is no cure.
Every option is palliative.

Not one single path promises you your child.

So what are you supposed to do with that?

You’re handed “Options” but none of them actually save them.
They might buy time.
They might not.
They might come with side effects.
They might not.

But the ending still sits there staring you in the face.

And then comes the part that hurts just as bad.

People have opinions.

If you choose treatment, there are risks. There’s suffering. There’s decline that could come from the very thing that’s supposed to help.

If you don’t… you carry the weight of every “What if” imaginable. And the quiet (Or not so quiet) judgment of people who think they know what they would do.

Damned if you do.
Damned if you don’t.

It honestly feels like being blindfolded, standing on a narrow bridge and someone just says, “Walk.”

No map.
No clear direction.
No guarantee you won’t fall.

Just walk.

And the worst part?
You’re not just walking for yourself, you’re carrying your child while you do it.

Every step feels heavy.
Every decision feels like it could be the wrong one.
Every day you wonder if you’re doing enough or too much.

It’s exhausting.
It’s terrifying.
And it’s lonely in a way I can’t even fully explain.

But at the end of the day we still have to choose something.

So we walk.

Not because we’re confident.
Not because we’re fearless.
Not because we have all the answers.

But because we don’t have another option.

And the only thing we can hold onto in the middle of all of this is God.

Because we don’t trust the path.
We don’t trust the outcomes.
We don’t trust statistics.

But we do trust Him.

We trust that He sees what we can’t.
We trust that He knows every step before we take it.
We trust that even when we feel completely lost we are not walking this alone.

So we keep going.
One step at a time.
For Bowen.

Even when it hurts.
Even when it’s messy.
Even when we question everything.

We walk by faith.

I posted a picture of Bowen holding that little Anxiety toy from Inside Out.
How fitting. Because that’s exactly what this feels like, living side by side with anxiety and fear every single day, trying to keep moving anyway.

03/25/2026

Hi everyone! Our big fundraising sale is coming up and we could use some help! Volunteers will need to come to Damascus, Oregon so if you live locally and would like to be a part of what we are doing please message us!

Hi Everyone!!! It’s that time! We are gearing up for our big yearly sale. If you are planning on donating tubers please message us! We need to get them ASAP so we can get them inventoried. We also need volunteers the next few weekends to prepare for the sale (except Easter weekend). Our sale will open April 25th and we also need help that weekend and the next to pack and ship the tubers. Let us know if you can help!
❤️🐞🎗️🐞❤️