Joy and Blessings
Iowa family gives thanks for blessings while youngest battles rare brain cancer.By Mayo Clinic Staff
Reese Buntenbach is like every other 3-year-old in many ways. She snuggles close and sucks her thumb as her mom, Brandi, holds Reese on her hip. She snacks on mini marshmallows and eats an ice cream treat that leaves a chocolate mustache. She can't wait to ride the carousel at Mall of America again, which she calls "Up- Down." She claps her hands and gleefully cries, "That's my baby, that's my baby," as her dad, Eric, unboxes a new baby doll for her. Then she cradles it gently and quietly beams for several minutes. She plays and laughs together with her older sister, Kinlee, 5, as they make up games while waiting for the adults to finish their business. Her favorite color is purple. That's why the brace she wears on her leg has purple straps and kittens.
"Most people that see Reese say they wouldn't even know she was ever sick with how she looks today," Brandi says.
Together, Eric, Brandi, Kinlee and Reese will always be a happy family. Nothing can take that away in this journey. They are grateful for their blessings granted by God and have been able to find joy in each other even when a huge chasm opened up in their lives, threatening to swallow their happiness.
While Kinlee had started to walk at 12 months, Reese was still unable to stand without assistance. When Reese had not yet taken her first steps at 16 months old, her parents took her to see their pediatrician.
Missing this important developmental milestone worried Reese's parents. Brandi remembers that something also seemed off with how Reese awkwardly positioned her right foot as she pulled herself up to stand or crawled up the stairs. "But everyone always told me it was nothing," she says.
An MRI scan revealed troubling news: There was a large mass covering the left side of Reese's brain. After emergency surgery at their local hospital in Des Moines, Iowa, the Buntenbachs learned that Reese had a fast-growing ependymoma, a rare and cancerous tumor.
The surgery didn't remove the entire tumor, leaving nearly a third of it behind. Doctors worried that removing more of it would cause major cognitive deficits in Reese, the Buntenbachs say.
Brandi and Eric then turned to Mayo Clinic to help their youngest daughter.
"We decided to leave the hospital that did not have much experience with this type of cancer and seek out the best care possible for Reese," Brandi says.
The family arrived in a February blizzard for their first appointment at Mayo Clinic in Rochester, Minnesota. They met pediatric neuro-oncologist Amulya A. Nageswara Rao, M.B.B.S., who brought together a team of specialists to provide individualized treatment for Reese.
Eric remembers when he was introduced to pediatric neurosurgeon David J. Daniels, M.D., Ph.D. "I'm a father," Dr. Daniels told him. "I will take care of your daughter as if she were my child."
Dr. Daniels would go on to perform a second surgery that successfully removed all visible signs of the tumor. At the end of it, he came out to see Eric and Brandi.
"She's asking for mama," he told them.
"We do think the better the surgery, the better the outcome," Dr. Rao says. "To be able to achieve a gross total resection was something that was very important."
Because of the aggressive nature of the tumor, Reese was next treated over six weeks in 30 sessions of proton beam therapy under the care of radiation oncologist Nadia N. Laack, M.D.
Proton beam therapy delivers precise radiation that spares healthy tissue. This is especially important in children, who are still developing.
At each of Reese's proton beam therapy treatments, Eric, Brandi, Kinlee and everyone else in the room sang Reese's favorite toddler tunes to comfort her such as "Twinkle, Twinkle Little Star" and "Wheels on the Bus."
Reese's last proton beam therapy treatment was a year and a half ago. All scans since continue to show no evidence of disease.
"We thank God every day for her healing," Brandi exclaims, adding, "as well as her incredible team at Mayo who gave us back our baby girl."
Eric and Brandi know that the tumor may come back. The reason ependymomas arise in the first place and why they recur is unknown. When they do recur, they can be even more difficult to treat than the original tumor. Reese will continue to be watched by Mayo doctors.
The family chooses to be hopeful and give back, raising funds in support of research. As a special fundraiser for Reese's birthday that followed her diagnosis, Eric and Brandi asked friends and family to support Mayo Clinic in lieu of gifts.
"We were touched by how many donated on her behalf, and we look forward to doing more fundraising in the future," Brandi says.
Dr. Rao credits new advances in understanding and treatments in part to the investment that people make in research.
"I think it's really important for us to come together as a community — the scientist in the lab, the clinician in the clinic and the families — in whatever way we can to understand these tumors better," she says. "More than anything, I really am grateful to families like the Buntenbachs."
With continuing physical therapy and occupational therapy, Reese walks and runs on her own. She strings new words together and talks in long sentences.
"She picks words up fast," Eric says.
"Dr. Rao wasn't sure what skills Reese would have," Brandi adds. "So it has been a miracle to watch her walk and talk."
Also new this year: Reese has started preschool and is playing in small groups.
"That's huge for her — she loves other kids," Brandi says. It's the first time Reese has returned to being in a learning and play environment with other children since having to leave day care nearly two years ago for treatment.
"I hope that Reese's story can provide hope to people that are just starting to go through this journey of … brain cancer," Eric says, pausing to collect his emotions. "There are survivors out there. Why not Reese?"
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Research Plays a Vital Role in Cancer Care
As researchers at Mayo Clinic investigate the group of tumors that include the type 3-year-old
Reese Buntenbach was diagnosed with, their new insights are improving patient care.
The ependymoma that Reese had is a type of glioma tumor. Over the past decade new information about differences at the molecular level of gliomas has emerged, leading to targeted therapies and highlighting differences between pediatric and adult brain tumors.
According to pediatric neuro-oncologist Amulya A. Nageswara Rao, M.B.B.S., this research arms physicians with the information to make individualized treatment plans for patients.
"We are talking about not just helping to cure these tumors for kids but also how to minimize the long-term effects," she says.
This research is a product of Mayo Clinic's Neuro-Oncology Program, one of the 10 major research programs of the Mayo Clinic Cancer Center, a National Cancer Institute-designated comprehensive cancer center.
"Cutting-edge clinical research is really important," says Jann N. Sarkaria, M.D., a program leader. "Mayo Clinic is one of the premier places to bring ideas from the lab into the clinic."
Researchers aim to understand the biology of brain tumors and how they develop, find ways to predict how patients will respond to treatment, develop therapies that help patients improve the quality of their lives, and increase survivorship rates.
Mayo Clinic's Neuro-Oncology Program contributes innovations that impact patient care faster because of the large number of patients who seek treatment at Mayo Clinic for brain tumors — more than 3,000 adults and children; the vast biobank of brain tumor samples; the teams of Mayo physicians and researchers collaborating across disciplines; and the extensive infrastructure required to conduct large-scale clinical trials.
"I think that's the reason people come to Mayo Clinic," Dr. Sarkaria says. "There's a high motivation for our patients to seek cutting-edge care."
Dec. 04, 2018