Roaring For Eli

09/24/2026

MRI Update

We got the results from Eli's MRI on Monday, which was done right after we got back from vacation. Overall, his scan is stable compared to his September 4th MRI. Nothing has grown, and we are incredibly thankful for that. 🙏🏼

The part we are still dealing with is the spinal fluid collecting in the cystic cavity where his original tumor was removed. Right now, there is about 35 mL of spinal fluid built back up.

Eli currently has a reservoir in his head that allows his neurosurgery team to drain that spinal fluid when it builds up. When they originally placed the reservoir, they chose it instead of putting in a permanent shunt because the main goal at that time was getting him through and finishing radiation without another bigger surgery.

Now that radiation is behind us, we had a conversation with his neurosurgeon about what is best for Eli long-term. Having to tap the reservoir and drain fluid every couple of weeks just isn't something we want him to continue going through if there is a better long-term option. Because the fluid continues to come back, we are now looking at having a shunt placed sometime in October or early November. The shunt would give the fluid a way to drain after reaching a certain pressure rather than letting it build up and needing to be manually drained over and over again.

We are hopeful that this will make things easier and more comfortable for him long-term, but at the same time, the thought of another brain surgery is scary. He has already been through so much in such a short amount of time, and it is hard knowing we are preparing to hand him over for another procedure.

Where we are right now

As we write this, we are in the emergency department with Eli. He was scheduled to have his reservoir tapped tomorrow to remove some of the spinal fluid, but he started showing some concerning symptoms. Because of his midline shift, we did not want to take any chances of things rupturing or of him dealing with worsening symptoms, so we decided to bring him in and get him tapped as soon as possible.

For now, we are holding onto the biggest piece of news: his MRI is stable. Nothing has grown. We will continue taking this one step at a time and trusting that God is walking right beside Eli through all of this.

Please continue to pray for Eli tonight as he gets his tap, for his neurosurgery team as they make plans for the shunt, and for peace for all of us as we prepare for what comes next. 🦁🩶🧠

You can tell he doesn’t feel good in this photo, but we can still work a laugh or smile out of him. 🩶 He’s a trooper! 🦁

09/24/2026

I feel like apologizing for not updating in a while has become a staple of my posts. Slowly, though, through some of the feedback I've gotten, I'm learning that maybe I shouldn't be so hard on myself for being present with Eli when things are good, and instead just enjoy the moment.
There have been a lot of self-reflecting moments like that this year. Honestly, this has been one of the most self-reflective years of my life, in ways I never would have imagined. I never had a good relationship with our finite existence, and this year I've had to come to terms with the fact that we all face the reality of our own mortality. I've also always been someone who dreaded waiting for something exciting. I'd rather work, sleep, or mindlessly pass the time just to get to the good part. This year I've learned to be more present, to appreciate the good times and the bad, and to be thankful for the exciting days and the boring ones.
But enough about my own introspection. Let's talk about Eli!
Eli (and all of us) were so blessed to visit Aunt ShayShay and Uncle John's home in Myrtle Beach, and we had the most amazing time! Our days ranged from exciting beach and pool days to relaxing afternoons building Legos at the kitchen table, all without a hint of a headache, which was the most relaxing part of all.
We went fishing and caught crabs on the beach, and Eli found a SHARK TOOTH! 🦈 We spent countless hours at the arcade, where Eli basically cleared out their prize section. We rode around on golf carts listening to Disney music and stopped for ice cream plenty of times. We had dinners looking out over the ocean.
But the best part was simply the time together. Every minute I get with this little boy and his wonderful mother is a blessing. I'll admit I take it for granted sometimes, but reminding myself of that, and reminding all of you to hold onto it with your own families, keeps me present and less likely to forget it.

09/23/2026

09/21/2026

We are on our way in for another limited MRI for Eli this morning. Please say a prayer for good results and continued stability. 🩶🙏

We got back from our Myrtle Beach vacation yesterday morning, and thankfully everything has been going well. We know God is with us through every scan, every appointment, and every unknown.

We appreciate every single prayer for our sweet boy more than you know. 🦁🩶🧠

09/06/2026

Myrtle Beach bound! 🌊☀️🦁

After this long past week, we are more than ready for some beach time, fun, and making sweet memories together. Eli couldn’t be more excited, and seeing him this happy makes out hearts so happy. 🩶

Here’s to a great trip with our favorite little lion. 🦁🌊

09/04/2026

GOD IS GOOD 🙌

We got Eli’s MRI results back and his scan is STABLE compared to his MRI from July. 🙏🩶

We honestly don’t even know how to put into words what it feels like to hear that right now. We have been so scared going into this MRI, especially with it being his first one since finishing radiation, and we have prayed and prayed for good news.

And today, stable is good news.

There are still so many unknowns with everything and we know we still have a long road ahead, but today we are just thanking God. Thanking Him for carrying Eli through everything he has already been through and thanking Him for giving us this little bit of good news that we have been praying so hard for.

We have asked God so many times to please give us more time with our boy. More days. More memories. More normal moments together. And right now, we are just so grateful.

Please keep praying for Eli. Keep praying that things stay stable, that his little body keeps healing from radiation, and that God continues to guide every decision and every step from here.

We know this journey is completely out of our hands, but it is not out of His. ✝️

Keep Roaring for Eli 🦁🩶🧠

09/04/2026

He is back in our arms. Please say big prayers for the appointment we are walking in to. ✝️🩶🧠🦁

09/04/2026

I know we just made a post but we wanted to also share this.

We are sitting here waiting on Eli's MRI results, and the fear and the anxiety have been almost more than we can carry today.

And then I looked down and found this little painted rock. A smiling avocado, I flipped it over and it said "Nora's Journey. Share me!"

Somewhere out there is another family walking their own hard road, and instead of folding into it, they're painting little rocks and leaving them out in the world for strangers to find. Today that stranger was me, sitting in a hospital trying to hold it together.

It was such a small thing, and it wrecked me in the best way. We are not alone in this. We are not the only family living through something unimaginable right now, and there are people out there who know exactly what this kind of waiting feels like.

I wouldn't wish this on anyone. Not one single family. But there is a real comfort in knowing others understand, and that they're still standing, and that they still have enough left over to hand a little hope to someone else.

Thank you, Nora's Journey. Thank you for leaving this rock, for sharing your journey, and for giving our family hope.

So we keep fighting. We keep hoping. We keep praying. And this little guy is going back out into the world soon to find whoever needs him next.




Nora’s journey

09/04/2026

There’s a kind of fear that comes with MRI day that is hard to explain unless you’ve lived it.

It’s waking up with a pit in your stomach.

It’s watching your child go without food or drinks because they have to be put under anesthesia.

It’s trying to stay calm for them when inside you are terrified.

It’s kissing them before they’re taken back and putting your whole world into someone else’s hands.

Then comes the waiting.

Waiting for them to fall asleep safely.
Waiting for the MRI to be finished.
Waiting for them to wake up.
Waiting for the doctor.
Waiting for the results.

And somehow, every minute feels longer than the one before it.

Because an MRI isn’t just a scan when it’s your child.

It can hold answers about whether treatment worked.
Whether things are stable.
Whether something has changed.
What comes next.

And all the while, your child is just being your child.

They may be asking for a snack, wanting their favorite show, talking about what they want to do later — while you’re sitting there knowing the words that come after that scan could change everything.

That part is hard.

Trying to stay present in the moment instead of living ten steps ahead. Trying not to let fear steal the time you have right in front of you.

It holds so many hopes, fears, prayers, and what-ifs all at once.

As a mom, you want so badly to take every hard thing away from your child, and MRI days are another reminder that there are some things you simply cannot fix for them.

So you hold their hand.
You smile when you want to cry.
You pray harder than you ever thought possible.
You remind yourself that God is already in the room you’re afraid to walk into.

And you wait.

To every parent who knows this feeling, I see you.

Sometimes the waiting is one of the hardest parts of all. 🙏🩶🦁🧠