In July of 2014 Kenzie started to complain of leg and hip pain. Within a week she was struggling to walk, was very tired and had a low-grade fever. When we first took her to the doctor, the Provider she saw thought she had a virus that was affecting her joints. We took her back a few days later when her symptoms weren’t letting up. It was at this visit that they ran some blood tests. Some of the results were abnormal so the plan was to return in a week to see if there were any improvements. A week went by and nothing changed, so Kenzie’s doctor decided to get an x-ray. Her x-ray was abnormal, and Kenzie was then sent for an MRI under anesthesia. The evening following her MRI our Pediatrician called and told us there were lesions on Kenzie’s pelvis and femurs. Our next step would be going to Children’s hospital in Omaha for further testing. Once there, Kenzie had a CT of her abdomen and pelvis, and had a bone marrow biopsy. The preliminary results from the bone marrow biopsy was cancer. It would be a few days before we knew exactly what type of cancer our 3-year-old would be fighting. After five days in the hospital the final pathology results came back and Kenzie was diagnosed with stage IV Neuroblastoma. The next morning Kenzie went to surgery to have a central line placed that would be used to deliver chemotherapy and medication. Later that day the first of five rounds of chemotherapy started. Each round was completed as an inpatient hospital stay lasting at least one week. After the second round of chemo she had her stem cells harvested for a future transplant. On December 16, 2014, a day after her 4th birthday, Kenzie started the stem cell transplant process at the University of Nebraska Medical Center in Omaha.
Kenzie’s final step in frontline treatment was Immunotherapy. She finished up in October of 2015. Another set of scans and a bone marrow biopsy were done, and the results determined she had no evidence of disease (NED).
The treatments were very difficult for Kenzie. As a 4-year-old she didn't completely understand it all. She did know she had “blastoma,” as she called it, and she couldn't do all the same things as her friends. Spending weeks at a time in the hospital hooked up to an IV pole became normal for her. With all that had happened Kenzie remained a happy smiling little girl who was always full of life.
In the spring of 2016 Kenzie relapsed. A new tumor had developed, and by the time it was discovered she had lost a significant amount of her eyesight in her left eye. With the additional passing of time to get a biopsy scheduled, plus the time waiting for the results, Kenzie had lost almost all of her eyesight and was having terrible headaches. Once the results confirmed that it was recurring Neuroblastoma she started chemotherapy and radiation therapy immediately. This helped shrink the tumor and some of her vision returned.
For relapsed Neuroblastoma there is no treatment plan, and the chance of survival decreases significantly. Kenzie was given off the shelf chemo that was known to be radiosensitive since she was completing radiation therapy simultaneously. After a few rounds of chemo, we enrolled Kenzie in a clinical trial. This first trial was at the University of Chicago for MIBG Therapy. She completed MIBG therapy a second time after the first round had some success. The second round had no significant effect on her disease.
With poor results from MIBG we started looking into T-Cell therapy at Seattle’s Children's hospital. We had enrolled her as soon as we could, but by the time her T-cells were ready to give back to her, her disease was progressing too fast. At this point any kind of treatment would not help. The combination of 3 plus years of treatments, and rapidly progressing disease, was too much for her little body. We took the advice of the Seattle team and our Nebraska Medicine oncology team, and took our sweet baby back home to make as many memories together as a family for her final days. Kenzie passed away in November 2017, taking half of our hearts with her. She will be loved and missed forever, but her memory will live on in our pursuit of better treatments for all the other children in this world who have been diagnosed with cancer.