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Waylon's Story

Updated: Apr 13, 2023

Our son, Waylon, was diagnosed a week after his 6th birthday in 2019 with a high grade glioma brain tumor that was inoperable. He bravely fought for over 2.5 years.

He was an inspiration to everyone around him. Despite all he had to go through, he never complained, and always showed love and compassion to everyone around him. Waylon was truly one of a kind, a pure and beautiful soul. He was a typical little "country boy" and loved running around exploring outside, fishing, dinosaurs and nerf guns.

For 22 months after he was initially diagnosed in 2019, after some surgeries were done and treatment started - his tumor remained, but was stable. He was able to go back to school, we were able to live somewhat normally for awhile and remained hopeful!

Unfortunately, after his first seizure in May 2021, we found out that his tumor had progressed. We changed treatment and did everything we could. That last year was such a rollercoaster. Some months would seem "better" and then others not so much. He was so strong and never complained. I will always be so proud of him.

Waylon passed away in May 2022, comfortably at home with us by his side.

He was truly a Warrior #warriorlikewaylon.

How Waylon's Tacklebox started :

In August 2021 we decided to go ahead and enroll Waylon into the care of KidsPath - the pediatric branch of our local area hospice/palliative care group. We told ourselves this was initially to try and avoid having to take him to Charlotte ( 45 min drive ) as often because some days he wasn't up to it - he was still taking oral chemo as we were trying everything we could, and he was just tired most days. I was so hesitant to enroll him because in my mind it was like I was giving up hope. It only took a few months before I realized what a blessing it was to have our amazing nurse - Amanda - come to our home. While it did save us several trips to Levine ( Children's Hospital ), It also gave me such peace of mind to have someone else, a qualified set of eyes, to be seeing him on a regular basis while we stayed home. My sweet Waylon was able to remain at home, where he wanted to be.

I gained such a respect and admiration for hospice care throughout our experience. At some point I started thinking about how hospice, especially pediatric hospice, is so often overlooked by most people, and most charitable organizations. The major toy drives and collections for childrens hospitals go to the hospitals - what about the kids who are under hospice care at home, or in hospice houses? I knew I wanted to do something at some point for them but I didn't know what or when, or how.

One day, a few months after Waylon passed - it all clicked : Tackleboxes, Waylon's Tacklebox. It was like a light bulb went off - Tackleboxes filled with all the things I know Waylon would have enjoyed during his last months. We made our mission specific to children and teens under hospice and palliative care - because they are so often overlooked, and these kids and families deserve it.

Waylon loved to make people smile, He would love this. If all we can do is bring a smile to someone during the hardest time of their lives - its worth it!

(The boxes are given directly from us to the local Hospice/KidsPath staff to hand out to their patients. )


1 Comment

May 01, 2023

What a great way to remember sweet Waylon, loved that precious child and all his remarkable ways of kindness and love 💙💙💙

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