At two years old, after her parents discovered a concerning red rash, Oaklynn was diagnosed with B-Cell Acute Lymphoblastic Leukemia. The rollercoaster that followed would include multiple failures to reach remission with standard treatment protocol, leading her family to seek CAR T-cell therapy as an alternative option. Today, Oaklynn remains more than 10 months cancer free!
In his own words, Oaklynn’s father Luke shares the story of his daughter’s diagnosis, treatment journey, and faith in CAR T-cell therapy.
July 24th, 2021 started like any other day. We were down stairs watching TV when our ornery little 2 year old, Oaklynn Keller, came marching downstairs.
Admittedly. a little grumpier than usual, she began barking orders for the rest of our family to fall in line. She demanded her favorite show be turned on the TV and, as she crawled into our laps, we noticed a rash at the bottom of her diaper. Just a small red rash that would be unnoticed by most. However, it was concerning to our family.
An hour or so later we were at our pediatricians office to get it checked out. I still remember our doctor nervously clicking his pen as he walked down the hall with our lab results in hand. He promptly asked us to head to Cincinnati Children’s Hospital. That was the day we heard the words no parents want to hear, “Your daughter has cancer…”
We quickly were made aware she was diagnosed with “standard risk” B-Cell Acute Lymphoblastic Leukemia (ALL). We were constantly reassured of the success rates and almost made to feel as if it were inevitable she would be in remission at the end of induction. She had a deletion/mutation of TP-53, but no “unfavorable” mutations genetically.
But we continued to fail every milestone set before us.
We were filled with hope that our daughter would beat cancer and every day felt like a rollercoaster — filled with mostly straight down hill slopes and a few small inclines that traditionally take your stomach — only to be immediately followed by the deep dark descent again.
A good example of that rollercoaster was Day 29 of induction therapy. We were met by our team of physicians and told Day 30 was the day we get to go home. They were confident that even though the cancer took longer than usual to clear her blood, she would be in remission and we were on the right path. We packed up all of our belongings and took everything to the truck to go home.
On Day 30, we woke up and had a welcoming party ready to see us home, only for the doctors to come in and share that we failed induction with 10.6% cancer remaining on her MRD results. We had to instantly start High-Risk Consolidation and would be staying in the hospital another 60 days.
The weeks following would not go any better and on September 23rd, at 9:58 PM, the day before Oaklynn’s 3rd birthday, we got the call that chemo was not going to prove a successful treatment for our daughter as we failed High-Risk Consolidation with 6% cancer remaining in her MRD results.
In that moment, I, the father of Oaklynn, felt a still small whisper, “I am going to make a way through CAR T-cells.” As a pastor, I had heard that still small voice before. But telling my wife at that moment that God was going to provide a way through CAR T-cells was not easy. Though I knew I had to share, as I was filled with peace that surpasses all understanding.
In the days to come, I was connected to Thomas Whitehead through Amy Kappen, whose daughter Sophia Kappen was a fellow CAR T-cell warrior who has finished her fight on earth and now celebrates with Jesus in Heaven. Amy promised Sophia she would never finish the fight on her behalf until she is called home to be together again. And dang, is she doing just that!
Thomas Whitehead would go on to connect us to Children’s Hospital of Philadelphia (CHOP) and we entered the HuCAR-T trial on November 18th, 2021. On December 24th, the day before Christmas at 9:58 PM, we received the phone call from CHOP stating our daughter was in remission for the first time! The physician that called us explained the results had just hit the computer, and they had no clue why they would have just come through, but had to call and let us know.
We celebrated that Christmas like never before.
Roughly a week later we got our NGS results that our daughter didn’t have a single cancer cell within 1,000,000 cells and she has continued those results for her 3 month, 6 month, and 9 month check ups!
We are now officially 10 months cancer free and could not be more thankful for the families that have gone before us and alongside us, the researchers and physicians that have devoted their entire careers to this, and we will never forget those brave souls that have finished their fight here on earth. We hope and pray to pick that champion flag up they carried for so long and help see it through the finish line of making CAR-T the front line defense and ending childhood cancer once and for all!
We receive messages from families around the world with experiences similar to Oaklynn’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find an eligible CAR T-cell therapy treatment center.
To search for available CAR T immunotherapy clinical trials, visit our Pediatric Cancer Clinical Trial Finder. To help us in our mission to give children around the world the opportunity to Activate the Cure to their cancer, Get Involved or Donate now.