2020 Honored Patient: Brody
Brody was a “surprise miracle” for Kayla and Jesse of Chippewa Falls, Wis. After using fertility medications to have their first two boys, they were delighted to have Brody with no help at all. Life was busy, but great, for Jesse, a union electrician, and Kayla, a registered nurse at a local hospital.
“In November of 2016 we were at my parents when Brody vomited,” recounted Kayla. “We returned home where it continued, and he went unresponsive. He was ultimately rushed to Rochester by helicopter. Brody had a baseball-sized tumor and severe hydrocephalus in his brain. Our lives would be changed forever!”
The next day they met with the neurosurgeon, who would perform a 10-hour surgery to try and save Brody’s life. He was able to remove the whole tumor, but feared Brody may not be the same happy little guy he once was.
Brody had a very rare, aggressive, and hard to treat brain cancer known as AT/RT. His prognosis was very grim.
“Several weeks went by before Brody started interacting with us, but he got his smile back!” said Kayla. “At 10 months old he was like a 25-pound newborn. He had to relearn how to hold his own head up, sit, crawl and even drink out of a bottle again.”
In June 2017, Brody completed his protocol of five rounds of chemo with stem cell transplants and proton beam radiation. Follow-up scans indicated that Brody "failed" the treatment course. He had a new spot on the spine and worsening disease on the brain. The doctor told them that there was no cure, but there is hope.
Brody's little body had its lifetime dose of radiation, and his bone marrow could not handle any more high dose chemo. He was started on low-dose, oral chemo and other meds in hopes of buying time. A subsequent scan showed some improvement. They continue scans every three months to monitor the disease.
“Today, Brody has endured so much, and we are beyond grateful he is still with us,” Kayla said. “He has had two shunt placements, five rounds of high dose chemo, three stem cell transplants, six weeks of Proton Beam Radiation to the entire brain and spine, seizures, five port placements, sepsis, C-Diff, RSV, pneumonia, several MRI's, multiple blood and platelets transfusions ... all while keeping a smile. He loves music, his dog, Ollie, and his older brothers. Brody is so special. He touches hearts and brightens days with his contagious smile and radiant personality.”
Last year, Jesse and Kayla felt like his developmental progress “was stuck.” After learning about the work being done at Children’s Minnesota, they started taking him there for his PT, OT and speech therapy. Before going to Children’s MN, Brody was not able to stand without support. Now he can take a couple of steps without his walker. The family is grateful.
“Although this journey has been difficult, we live each day with a grateful heart and remember how blessed we are,” said Kayla.
A simple, but powerful, lesson for all of us.