09/04/2026
💜 Oakie Jo Update—One Really Hard Week 💜
Honestly, I don’t even really know where to start with this week.
It was long. It was exhausting. It was emotional. And it was a whole lot of everything all at once.
We have been in Rochester MN at Mayo since Sunday for follow-ups, dental surgery, scans, testing, and appointments, and tonight we finally get to head home.
Our little warrior has been through SO much this week. 🥺💜
Oaklynn had dental surgery to help several teeth that had become soft from her chemo treatments and were starting to cause her pain. Thankfully, the actual surgery went well. But Monday night, she developed some pretty significant swelling and redness on the right side of her face.
Her doctors believe it may have been a reaction to one of the cleaners they used to prep her skin. We’re still watching it very closely because the swelling hasn’t completely gone away.
And I’m trying really hard to trust what the doctors are telling me while also listening to that little voice in the back of my head that says, “Something still isn’t quite right.”
Maybe it is a reaction. Maybe it just needs more time. Maybe it’s nothing. But my mom gut keeps telling me to watch it closely, because if it were simply a contact allergy, I feel like the swelling and redness should be improving more by now. I’m not a doctor. I’m just a mom.
A very tired, very worried, slightly obsessive momcologist. 😂
So we watch. We wait. We pray. And we keep asking questions.
And then came the scans.
I don’t think I’ll ever be able to explain what it feels like to sit there waiting for someone to tell you what your child’s brain and spine scans look like.
You try to breathe.
You try not to think about every possible outcome.
You try to convince yourself not to panic.
And then we got some good news.
Her brain and spine scans looked good considering she has been off treatment for a period of time recently. They are considering her scans stable, even though there are some new areas of enhancement they want to keep a close eye on.
For now, we wait until November and scan again.
So we celebrate the good news… while knowing we aren't completely out of the woods.
That seems to be the hardest part of this journey — learning how to hold hope and fear in the same hands. 💔💜
Then came the conversation about chemo.
Her little body has been struggling so much with the full dose. The side effects have been incredibly hard on her, and watching your child feel that awful because of the very medicine that is supposed to save her is something I don't think a parent can ever truly prepare for.
Her team has decided to decrease her weekly chemo dose by 25%.
The hope is that giving her body a little bit of a break will help her tolerate treatment better, while still keeping enough medicine in her system to continue fighting her cancer/tumor.
Depending on what her next scans show, they may increase her dose again.
It’s hard.
Because as a mom, there is always that voice asking, “Are we doing enough?”
You want to fight as hard as humanly possible. You want every possible weapon against this horrible disease.
But you also look at your baby and realize her body is telling you it needs a break.
So we trust her team.
We trust her body.
And we keep fighting.
We also saw neurology this week, and they were SO happy with Oaklynn’s progress in both her fine and gross motor skills. 🥹💜
That was such a beautiful little bright spot in a week that felt so heavy.
And Wednesday, we had something we rarely get anymore — a completely free day.
No scans.
No needles.
No appointments.
Just a little girl who got to be a little girl.
We went to Oxbow Nature Center, explored, played, and made some memories together. 🌿🦋
Of course, because this is our life right now, we ended up having to go back to oncology because the swelling on her face continued. 😑
But somewhere between all of the hard stuff, there were little moments of laughter and fun.
And those moments mean EVERYTHING to me.
Our last day was developmental testing, and that one was really hard emotionally.
Oaklynn was terrified.
She has had some really difficult experiences with testing at another care facility, and those experiences don't just disappear. She remembered. She was scared. She had some very big feelings.
So Momma stayed right beside her for the entire thing.
It took some time, but once she realized she was safe, she started participating and did the very best she could.
And I was so damn proud of her.
Because sometimes being brave doesn't look like smiling through it.
Sometimes being brave looks like being scared, crying, needing your mom, and still trying anyway.
That’s my girl. 💜
So tonight, we are tired.
Really, really tired.
Our girl is tired.
Her body is tired.
Her momma is tired.
But she is here.
She is fighting.
And right now, she is doing okay.
She's just going through a rough patch.
And I think sometimes that's important to say too.
Not every update is a huge victory.
Not every scan is perfectly clean.
Not every day is filled with smiles.
Sometimes the victory is simply making it through the week.
And this week, our little warrior did exactly that. 💜
Thank you.
Thank you to every single person who has prayed for her. Every person who has checked in. Every person who has shared her story. Every person who has whispered her name in a prayer when we didn't even know you were doing it.
You may never understand how much that means to us.
We feel so incredibly loved.
Please keep our sweet Oakie Jo in your prayers.
Pray that this swelling finally goes away and isn't anything serious.
Pray that her little body handles the new chemo dose better.
Pray that she continues making progress.
And please, please pray that those November scans bring more good news.
For now, we're going home.
We're going to hug our girl a little tighter.
We're going to let her rest.
And we're going to take this one day at a time.
Because that's all we can do.
One day. One battle. One breath at a time.
Keep fighting, Oakie Jo.
Momma's right here.
Always. 💜🎗️
