09/02/2026
💙 It's Warrior Wednesday 💙
🐴Meet this week's warrior, Kaisley 🐴
Kaisley, age 5 at diagnosis, was just a normal, happy, healthy little cowgirl! She loved riding her horses, swimming, and dancing! Until August 20, 2025, when she started complaining of a tummy ache, followed by waking up to a 103-degree fever.
The next four days included three different trips to the doctor’s office, where we were told she had a virus after just getting over pneumonia. Her fevers were around the clock, ranging from 102–104 degrees. She was constantly saying, “My tummy hurts,” and throwing up. She was absolutely miserable.
Feeling defeated and not knowing what else to do, we did an at-home COVID, influenza, and RSV test. All were negative.
As a mama, I just knew in my heart that this had to be more than a virus.
Tuck and I loaded her up in the car and took off. Knowing Ames didn’t have a pediatrician staffing the ER, we made the decision to drive straight to Blank Children’s Hospital on August 24th.
Her initial labs were pretty wild. Her liver numbers were way outside the normal range, along with multiple other concerning labs. The doctors ordered a liver ultrasound, which was done in the ER. Both her liver and spleen were significantly enlarged, and she was admitted for her first hospital stay.
That night, around midnight, we received a confirmed diagnosis of mono.
Over the next two days, her labs became even more concerning. Her fevers could only be controlled with Tylenol, and despite all of the fluids she was receiving, she was severely dehydrated.
We continued to express our concerns. We felt like she should have been showing some signs of improvement by that point, but instead, she was getting worse. The doctors agreed.
They told us they were adding hematology/oncology to our team.
The next morning, Kaisley would be sedated for a PICC line placement and a bone marrow biopsy.
That was the moment our hearts completely broke.
We knew our girl was very sick. They began talking to us about leukemia and HLH.
The next morning, they drew what felt like an endless amount of blood. They needed to make sure her platelets were stable enough for the biopsy, and we soon learned she would need a platelet transfusion first.
That morning, we sat down with Dr. Fustino. He drew us a map and explained that we were essentially looking at two possibilities: leukemia or HLH.
Kaisley was meeting many of the criteria for an HLH diagnosis, but without the bone marrow biopsy, it was still a toss-up.
He made something very clear to us: neither diagnosis was something we wanted. But with leukemia, there were treatment options and survival rates he could speak more confidently about. With HLH, patients can change rapidly, and it can be incredibly unpredictable.
She received her platelet transfusion, and we headed downstairs for the procedure.
Once Kaisley was sedated, we were taken back upstairs to pack up her room on Blank 3 because we were being moved to Blank 4, the hematology/oncology floor.
As we were packing her things, we got the phone call no parent ever wants to receive.
Kaisley’s oxygen had crashed, and we needed to get downstairs immediately.
It was, without a doubt, one of the scariest moments of our lives.
Thankfully, they were able to stabilize her. Dr. Fustino had already been able to complete the bone marrow biopsy before the crash, but they were unable to place her PICC line. She would have to be put under general anesthesia for that at a later date.
Once we got her settled into her new room, we received the results.
Dr. Fustino confirmed that no leukemia cells were found. At that time, HLH was her confirmed diagnosis.
Her liver was in critical condition, and she was no longer able to receive certain medications for her fevers. Her PICC line placement was scheduled for the next day, and thankfully, that procedure went much more smoothly under general anesthesia.
That same day, they started her treatment with high-dose steroids.
Some of her lab numbers quickly started showing improvement, while others continued to decline.
Then came August 29th. Chemotherapy and immunotherapy began.
And our girl fought. She responded incredibly well to treatment.
She received 10 rounds of chemotherapy, four immunotherapy infusions, and extremely high-dose steroids. During treatment, she went from 50 pounds to 70 pounds.
We later learned that her HLH was secondary HLH caused by EBV, and thankfully, the likelihood of HLH relapsing in cases of secondary HLH like hers is very rare.
Looking back over these last 12 months, there are so many moments that we will never forget.
There were moments when we were terrified.
Moments when we didn’t understand what was happening.
Moments when we felt completely helpless.
But through it all, Kaisley showed strength when she was weak.
She showed us what true bravery looks like.
She showed us that even in the darkest moments, there is still hope.
Today, our hearts are so incredibly full.
One year ago, we had no idea what the next 12 months would hold.
Today, we can look at our girl and say:
SHE DID IT. ❤️
She is stronger than ever, and we are beyond thankful for every good lab, every milestone, every laugh, every normal day, and every moment we get with her.
Kaisley continues to go to Blank Children’s Hospital every month for labs and will remain on that schedule through November. Once she reaches her one-year remission milestone, they will space her labs out to every three months.
They will continue to monitor her closely. There is a very slight increased risk of developing leukemia due to the type of chemotherapy she received, etoposide, but we are choosing to focus on the positives, take one day at a time, and pray that those labs continue to come back good.
