Kinlee’s Krew

12/31/2025

They didn’t expect our girl to make it through 2025, but God had a better plan and here she is ready to ring in 2026! Auntie Raegan fixed us all up, and now Kinlee is ready to ring it in BIG in true Kinlee fashion. Extra, sparkly, and over the top! So yall run out to 432 Fireworks off of HWY 69 just before the state school, and tell them you’re part of Kinlee’s Krew, and Kinlee sent you out to shop! Happy New Year, friends!

12/30/2025

We are thrilled to announce a bold new wave of research investment. Another year of funding for the Diffuse Midline Glioma – Adaptive Combinatorial Trial (DMG – ACT); new laboratory equipment at the University of Michigan Mott Children’s Hospital; and six new fellowships supporting exceptional predoctoral and postdoctoral scientists dedicated to DIPG and DMG.

This latest round of awards, totaling $1.6 million, brings our 2025 research funding to an unprecedented $8 million, our largest investment year yet.

Fellowships:

▪️ Salam Almriri of University of Texas MD Anderson Cancer Center, mentored by Sachet Ashok

▪️ Anja Kordowski of Seattle Children’s Hospital, mentored by Nick Vitanza
(co-funded by the Violet Foundation for Pediatric Brain Cancer)

▪️ Bryan Kincheon Li of University of California San Diego, School of Medicine, mentored by Praveen Raju
(co-funded by the Violet Foundation for Pediatric Brain Cancer)

▪️ Kevin Lu of Dana-Farber Cancer Institute, mentored by Robbie Majzner and Mariella Filbin
(co-funded by the Violet Foundation for Pediatric Brain Cancer)

▪️ Erik Peterson of University of Michigan, mentored by Daniel Wahl

▪️ Embla Steiner-Malka of Stanford Junior University, mentored by Michelle Monje
(co-funded by Neev Kolte & Brave Ronil Foundation)

Special Projects:

▪️ DMG-ACT (co-funded by Avery’s Little Army and Zatkoff Family Legacy Fund)

▪️Carl Koschmann – University of Michigan
Equipment Support: IVIS™ Lumina S5 Optical Imaging System

Learn more here: https://chadtough.org/major-research-investment-accelerates-dipg-dmg-breakthroughs/

12/30/2025

Ive been more quiet than I thought I would be approaching the one years mark of what we know as “D Day” now. I thought I would have a soap box to stand on, speeches to post, and I guess perhaps I do. But when I said previously I had to take a step back, it’s moments like this I’ve been soaking in. This year has been HEAVY. I still feel like I’m trying to catch my breath from the very first gut punch of her diagnosis. The anxiety has been at an all time high. Paranoia and fear set in. I fight my own mind daily trying to keep the negative energy out. And stepping away was what I needed. What WE needed. I’ve said all along that I don’t like to update our followers in the moment. A lot of times, when I post, what I’m posting about has already came and went. Because what is most important is being present. For big moments and little moments just the same. Our girl had a busy day today, and finished it off with a hot bath, a milk lotion massage, and some puppy snuggles. I wouldn’t have missed that for the world. The updates can come some other day 🩷🩷

12/27/2025

I have been struggling lately. More so than I have in a LONG time. This time of year that has always been my favorite now carries so many heavy things. My paternal grandfather’s birthday on the 3rd followed 3 days later by his passing. My maternal grandmothers passing on the 22nd, with her birthday 8 days later. Last year, Kinlee was diagnosed on the 18th, exactly one week before Christmas. It has been heavy. And it has been hard. I’ve felt myself not wanting to walk through the church doors because if I am being honest, there have been times I feel like He isn’t hearing me. Times where I feel angry because my baby needs a miracle, and she hasn’t gotten the one I’ve prayed for. I’m not the wife my husband needs. I’m not the mom my kids deserve. I’m not the daughter, sister, or friend I should be. I’ve felt like I am failing everything and everyone around me. So I get quiet. And I withdraw from as much as I can. I’ve sat and looked at my devotionals and Bible studies I was so excited about sit stagnant on my dresser with no energy or desire to read what the pages held inside.

Finally I opened a page and decided to read. It talked about the Samaritan woman at the well. How she came at noon because she was so ashamed she couldn't face anyone. How she'd failed at everything, marriage, reputation, faith.

And Jesus met her there anyway.

He didn't wait for her to get her life together. Didn't wait for her to fix herself. Didn't tell her to try harder or wake up earlier or be more disciplined.

He just showed up. In the middle of her mess. And offered her living water.

The devotional ended with this:

"God doesn't need your perfection. He wants your presence. Even if it's messy. Even if it's only five minutes. Even if all you can offer is your brokenness. That's enough. You're enough."

Yall, God is big enough to handle our brokenness. He is big enough to handle the moments when we are so caught up on not receiving the big miracle that we are overlooking the small ones. He is big enough to handle our hurt and frustrations or the moments we cry and just don’t understand. He is big enough to handle our shortcomings and imperfections. It was never designed for us to be perfect and it was never designed for us to have to carry it all. We just can’t stay there. We have to move forward, and we have to remember that He never leaves our side. We have to slow down, take a deep breath, and look for the tiny miracles. The moments they say wouldn’t happen. The moments they said wouldn’t be. The days they said we wouldn’t have. And when you look at the tiny things, they add up to become small things. Those small things add up to average size things, and before we know it, we are getting the big prayers we prayed about.

It’s hard not to get caught up in the season sometimes. To not be overwhelmed. But God will meet us right where we are each and every time, no matter how big of a mess or struggle it may be. 🤍

12/25/2025

There is something so magical about the glow of Christmas lights on the cheeks of our babies. This year has been a tough one. I thought I would have so much to say these last few days as we approached one year of her being diagnosed with DIPG. Instead, I have found myself avoiding people. Avoiding the public. Avoiding social media. I’ve only wanted to soak it all in. Every single second. Santa came and went, and as everyone in the house slept peacefully, I sat in the quiet watching her rest, and just cried. I cried knowing she wouldn’t be running to my bedside at daylight to wake me so I could wake her daddy because she would NEVER. It was better when Mama did it. But I also cried because I am beyond grateful she is still here with us when they told us she wouldn’t be. I cried because the weight of this year and everything it has entailed has been heavy, yet here I am. Here WE are walking and carrying it all. I cried because it’s tough feeling the burden yet still feeling blessed all at once. I cried because of everything we have been through and overcome, but also for the unknown of what is still to come. Most days, I don’t know what to feel, but I manage. This season is hard because it’s so different that what we have always known. These are the moments where it’s so easy for fear and doubt to creep in, and try to steal the joy away. So, while I may be crying now, as soon as I hear that quiet little voice say, “Mama” next to me on the couch, the tears will be gone, and we will be making every moment count. This will probably be the only post from me today. Maybe again for a few days. I have things to say. Things to reflect on from the last year. But right now, it is time for maintaining the magic and spirit of Christmas, and feeling the love and goodness of Jesus that has embraced us for the last 53 weeks. It is for making memories, and loving on our girl. It is for staying in pajamas all day, sleeping in, and eating too much. It’s for staring at glowing cheeks while they sleep, and knowing that no matter how heavy things feel, that you have been blessed beyond measure, and thanking God for yet another day. Merry Christmas everyone~ from our home to yours 🩷

12/15/2025

Can you do us a favor, and invite your friends to our page? Click the 3 dots on our page, then “Invite Friends” on the next. You can select up to 1000 a day until all of your friends are invited to join the krew, and help spread awareness for Kinlee’s fight, and this awful disease!

12/14/2025

A post from my personal page yesterday:

This picture was taken 6 months ago today. We had noticed changes in Kinlee that had happened very quickly. They instructed us to come down to Houston for further testing on 06/12. The MRI machine was down, so they said they would do a quick CT to check her shunt and make sure there was no hydrocephalus, and then the next morning they would do the MRI. The CT results showed something they weren’t happy with, and they said they would need the MRI to confirm. So we settled in. They came and got her around 1 am for the scan. A few hours later, they came and pulled us from the room to deliver the news. Her tumor had herniated through the base of the skull and was pressing further into the brain stem. The told us that this pressure would cause her to slowly lose consciousness, and basically she would fall asleep and not wake back up again. There was nothing else to do. They sent us home on hospice on 06/13. They honestly didn’t expect her to make it through the weekend, but our doctor said if she was still here when he returned back to the US, we would make a decision on what to do next. So we left. Broken. Devastated. Lost. Uncertain. Empty. Fast forward to Fathers Day on Sunday, and she ended up very sick. Long story short, hospice here failed her, and we landed in the ER at Woodland Heights. She had pneumonia in both lungs, and was pretty much not responding to us. They stabilized her, and we ended up transferring to MD Anderson. After 2 weeks, her doctor returned and honestly looked shocked we were there. She improved rather quickly after we got there. Came off of oxygen, started eating, was walking with PT. Better than she had been when we saw him last. He decided to get another MRI, and we would develop a plan. Kinlee was CLEARLY fighting, and as long as she was fighting, so were we. The next day, they call us out again for results. The look on their faces made me queezy. “We don’t know how to explain it, but the swelling around the tumor is reduced, the bleed is gone, and it’s no longer herniated through the foramen magnum.” My husband rarely speaks, but he did that day. He told them, “I can. She has a mom and dad that know how to get on their knees and pray. With all due respect, God has the final say, not doctors.” Our doctor agreed. We began hearing phrases like “our little miracle baby” or “little warrior”. “No medical explanation”. I prayed over again that God move in such a way that He is the ONLY explanation. That’s what He has done. They can’t tell us how or why. But she surpassed their “days, maybe weeks”. She surpassed making it through the weekend. She has surpassed the expectancy of 6-9 months. Her doctor told us “she has miraculously surpassed all expectations we had for her”. 6 months ago today, the told us to prepare for her to leave us really soon. 6 months ago today, Hope was temporarily ripped from us once again. Tonight, I am snuggling my sweet girl on the couch, counting our blessings, and thanking God for his continued favor and grace.

12/02/2025

12/02/2025

This is another foundation worth donating too!