Kenzie’s Legacy
Our beautiful daughter, Mackenzie (Kenzie), was diagnosed with high-risk, metastatic medulloblastoma in May of 2018 at the age of seven. Over the next year, she endured two emergency brain surgeries, six weeks of whole brain and spine radiation, and seven months of high-dose chemotherapy. Mackenzie was at Children’s Wisconsin weekly, sometimes even daily, for treatment. Many of her chemotherapies were so toxic that she was required to stay 72 hours inpatient as they were transfused into her little body. Worse yet, she often ended up spending additional time inpatient due to the side effects and the horrible sickness that came as a result of these toxic medicines, all in the effort to rid her of cancer.
At the end of her treatment in March of 2019, she had what appeared to be “stable” disease, and her doctors, along with us, prayed that the spots showing on the MRI were dead tissue that had not dissolved. For six months, we celebrated life and lived with the greatest hope that Mackenzie had beaten her cancer. Even though she was done with cancer treatment, Kenzie still visited the hospital weekly for various therapy appointments. The brutal side effects of childhood cancer had ravaged her body during that year of treatment. One of her brain surgeries left her with posterior fossa syndrome, meaning she had to relearn how to walk. Her dominant hand switched from right to left overnight, she lost the majority of her gross and fine motor skills, and faced many other challenges.
In addition, she had lost so much weight from feeling ill due to the chemotherapy that she needed a feeding tube for months after treatment. Despite these challenges, she was determined and excited to return to “normal” childhood. Our family celebrated the end of her treatment with the most beautiful trip, gifted to us by Make-A-Wish Wisconsin, where we went to Disney World. Mackenzie started swim lessons and gymnastics again, activities she had to stop during treatment as the radiation and chemotherapy weakened her once-strong body. Most importantly to Kenzie, she was able to start attending school again. She loved learning, being social, and missed school desperately during her cancer battle.
As with most pediatric brain cancer patients, Mackenzie had MRIs every three months to monitor her disease. In October 2019, just six months after her treatment ended, we were devastated to learn that Mackenzie’s cancer had returned, this time in multiple new spots in her brain. I remember my husband and I sitting with Mackenzie’s brain tumor clinic nurse, her radiation oncologist, her neuro-oncologist, and a fellow doctor who had been with us since her diagnosis. We all cried as they explained that no matter what treatment options we pursued for the relapsed cancer, Mackenzie was now considered terminally ill. There was no doubt that her disease would ultimately take her life.
For another year, Mackenzie endured various chemotherapies to try to hold off the tumor cells. Around August of 2020, Mackenzie made it clear that she was exhausted from the treatments. My husband and I made the heartbreaking decision to stop treatment, enter her into hospice care, and focus on quality of life and making memories.
Early in the morning of April 9, 2021, with her dad and I loving on her, Kenzie took the softest two breaths and left this Earth. Although Mackenzie died at just ten years old, her impact during her short time here will be felt for decades to come. Anyone fortunate enough to have known our daughter will tell you that she embodied love. She often helped collect toys for fellow cancer patients at Children’s Wisconsin and served with me at blood drives to help people understand the importance of blood donations for those undergoing treatment.
Mackenzie’s love for her fellow humans inspired her dad and me to donate her tumor tissue. We know Kenzie is looking down, cheering us on as we continue to advocate for pediatric cancer research. We could not think of a better legacy than to give the gift of hope for a future where childhood cancer no longer exists.
