Allie’s Legacy
In early 2023, Allie started noticing some weakness in her left arm. We thought she had probably pulled something or strained a muscle. After some time passed and the weakness wasn’t improving—and even seemed to be getting worse—we took her to see an orthopedic surgeon.
At that appointment (a Friday), he did some testing and told us he believed Allie’s issue was neurological, not orthopedic. He scheduled an MRI for Monday and set up an appointment with a pediatric neurologist for Tuesday. The MRI showed a large mass growing inside her spinal canal in her neck from C2 to C6. They weren’t sure if it was a tumor or a lesion caused by an autoimmune disease, but because of where it was located, a biopsy was considered a last resort.
Over the next five weeks, all sorts of testing and treatments were done to rule out anything they could think of: high doses of steroids, tons of labs, two lumbar punctures, and PLEX treatments. After her third treatment, her arm was getting significantly worse. A third MRI revealed that the mass had grown down to C7.
After much deliberation and prayer on our part, it was decided that a biopsy was necessary to figure out exactly what we were fighting. On June 27, 2023, the biopsy was performed. Because of the tumor’s location, it was a long, difficult surgery. A piece of her spine had to be removed, tumor tissue extracted, and the bone replaced—all while trying not to paralyze her. She did lose all use of her left arm, but by God’s grace, she could still walk, and she regained some use of her arm!
On June 30th, we got the results of the biopsy: a rare, aggressive type of cancer called Diffuse Midline Glioma (DMG). It has no cure. It is terminal, with a life expectancy of 9 to 11 months. We were given the option to radiate the tumor to try and slow its growth—five days a week for six weeks. She began treatment almost immediately.
After much prayer and many conversations, Allie decided she did not want to pursue clinical trials. She didn’t want to spend what time she had left away from her family and friends, stuck in a hospital. So we chose to make as many memories as possible.
Between August 2023 and April 2024, we traveled to Chicago, Hawaii (through Make-A-Wish), Florida, Tennessee, Kentucky, Arizona, Florida again, and South Carolina. The Lord blessed our family with the gift of time—time to say all the things, to make all sorts of memories, to laugh, for Allie to write letters and pray for her family and friends, and time to fervently pray for miraculous healing.
We also have a 23-year-old son and daughter-in-law, and a 20-year-old daughter. They were able to enjoy precious time together with Allie.
When we returned from Florida in April 2024, a follow-up MRI showed that her cancer was no longer stable but progressing. We asked Allie if there was anywhere else she’d like to go, and she immediately said, “Charleston.” So before she began a second round of radiation, we took one last trip together. It was as beautiful as it was heartbreaking—we knew what we were going home to.
Allie completed another 25 radiation sessions, which ultimately paralyzed her from the neck down. She entered hospice on Memorial Day weekend. From there, we had six more months.
Six months of laughter and teasing.
Six months of watching movies and old TV shows.
Six months of singing.
Six months to say “I love you.”
Six months to kiss her sweet face.
We celebrated Thanksgiving and Christmas together. For six whole months, our family spent every single day together, walking Allie home—gently, tenderly, caring for her the best we could, until she ran straight from our arms into Jesus’s.
Allie was the most joyful, fun-loving ray of sunshine we’ve ever known. We were so incredibly blessed to have her in our lives. She loved the little things in life: rain hitting a windowpane, mushrooms growing on a forest floor, the tiniest of flowers. She loved puppy dogs and butterflies, succulents and rainbows.
But more than anything, Allie loved Jesus. She trusted Him with her life and her future. She knew that whenever He chose to take her home to Heaven, it wasn’t a punishment—it was a reward. For she had finished her race, and finished it well.
Our Donation Story
From the moment Allie realized the extent of her diagnosis, her goals were to make as many memories as possible, show God’s love through the most difficult of circumstances, and help other people who will fight this disease by donating her tumor tissue.
Allie’s request all along was to be a donor—to help find a cure for this devastating, awful cancer. Though she could not be an organ donor due to the cancer, she was honored to donate her tumor tissue for research, praying that discoveries would be made so others wouldn’t have to endure what she did.
