Kinlee’s Krew

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.

12/04/2025

📣 Huntsville & Madison friends — tomorrow’s the day! 💛

Our Dine Out for DIPG fundraiser at the Panera Bread in Town Madison is happening all day on December 4th, and we’d love your support.

🍞 How to participate:
• Order anytime tomorrow through the Panera app, kiosk, or panerabread.com for pickup at 120 Outfield Drive and enter code FUND4U at checkout.
• Prefer to dine in? Stop by the café between 4–8 PM and simply show this flyer.

💛 Panera will donate 30% of net sales to Princess Hailey’s Hope, helping us continue our mission to support DIPG families and fund critical research.

Every meal makes a difference. Thank you for helping us honor Hailey and lift up the kids we serve. 💛

Note: Catering and gift card purchases aren’t included in the fundraiser total.

12/02/2025

12/02/2025

This is another foundation worth donating too!

12/02/2025

YOU GUYS! As most know, we took Kinlee to Disney back in the spring for her birthday. We grabbed a few pins she loved while we perused through the gift shops. In the end of October, we went again so she could enjoy both Halloween AND Christmas at Mickey’s house. Since she is no longer walking, she and I spent more time looking and shopping this time. She REALLY got into the pins. We came across a lovely group of pin traders and collectors who quickly jumped into action wanting to do something for her. She received a package yesterday evening, and in it was this sweet little countdown calendar with a pin wrapped and neatly tucked away fo each day. Kinlee was SO excited because she has always loved the Christmas countdown. This little gift was SO very thoughtful, and as she carefully traced over everything with her little hand, I quietly wiped tears away from my eyes. It’s the small things, and I can never truly express the gratitude I have for those wanting to put a smile on our princess’s face. I’ll add the pin from each day in the comments!

12/02/2025

It’s Tuesday. Since August, Tuesdays have been our main hospital day. Super early mornings, long drives, long days, late night travels. Different team, different doctors, different testing. Scans, labs, treatments, and infusions. This all results in a lot of time talking to God. Starting in the car headed down. AirPods in, my “Kinlee Is Healed” playlist going, and prayers flowing as steady as the tears fall. A lot of fear, anxiety, and uncertainty. For those that KNOW ME know me, they know that I attended at church retreat in 2023 that was life changing for me. What some didn’t know is that, after one of the response activities, I was slipped a nail to carry with me as a reminder to nail all my burdens to the cross, and leave them at the feet of Jesus. You see, what was nailed to that cross so many years ago was more than just a man. It was humanity. It was hope. It was fear. It was pain. It was worry. Anxiety. Uncertainty. Sadness. Shame. Doubt. And most of all, it was love. What hung on that cross, WHO hung on that cross, was pure and absolute love. A greater love than any of us have ever known. To look at my daughter going through this, feeling the overwhelming amount of love I have for her, and knowing it didn’t even compare to the love He has for us is just unfathomable to me. She’s stronger than I could ever be. She’s carrying her own cross, and even as heavy as it feels to me, I can’t imagine the weight it is on her. But she carries it with grace. With compassion and empathy. So as we sit here on another Tuesday waiting for another appointment, I will cling to this nail as a reminder to cling on to hope.

12/01/2025

12/01/2025

“Fear not, for I am with you…” Isaiah 41:10�We’re holding onto this truth, and holding onto hope for our sweet girl.I'll uphold you with my righteous right h...