As Amy Smolak’s family was enjoying a birthday party in August 2011, she noticed something was not quite right with her son, Nic Ballweber. Although Ballweber told his mother he was “fine,” Smolak decided to take him to Urgent Care in Elk River.
After a short examination, Ballweber was sent to the emergency room at Mercy Hospital. A doctor told Smolak that they found in a lump in her son’s brain, he thought it was cancer and they were transferring Ballweber to Children’s Hospital in Minneapolis.
“I asked the doctor how he could say it was cancer without doing a biopsy,” Smolak said. “He said in all his years of medicine, he had never known a lump like this not to be cancer. He said, ‘After today your life will never be the same.’ I cannot remember his name, but he was right; everything has changed.”
By midnight, the doctors at Children’s confirmed Ballweber had brain cancer. The tumor was inside the pons, a structure located in the brain stem. Smolak was told that because of the location of the tumor, surgery was not an option.
Ballweber, who could no longer walk on his own, began six weeks of radiation treatments.
The little boy who so badly wanted to walk to his first day of first grade at Wilson Elementary School with the “big kids” would arrive in a wheelchair.
With his radiation schedule, Ballweber was only able to attend school for half days. In October the family received bad news; after six weeks of radiation, the tumor continued to grow. With a diagnosis of weeks to a few months to live, Smolak pulled her son out of school.
But Smolak never gave up hope. She worked closely with her son’s oncologist, Dr. Kris Ann Schultz, who shared his information with doctors across the country. About a dozen said surgery could not be done before Smolak received word from Stanford University that surgery was possible “in the right hands.”
Smolak found those right hands when Schultz introduced her to Dr. Joseph Petronio, a neurosurgeon at Children’s Hospital.
“In one 10-minute session, Dr. Petronio convinced me to let him operate on my son,” Smolak said. “He couldn’t guarantee me that Nic wouldn’t be worse and there was a 10 percent chance he could die on the operating table, but at that point the tumor was growing very fast.”
Bellweber underwent a nine-hour surgery Jan. 20. Tests indicated that the tumor was likely a low-grade tumor or benign cyst.
“Either of these add two years to Nic’s life, even without further treatment,” Smolak wrote on Bellweber’s Caring Bridge site the day of the surgery.
Within two hours of the surgery, Bellweber was playing video games. Within two weeks of therapy at Gillette Children’s Specialty Healthcare, he was running. Feb. 24, Bellweber walked into Wilson Elementary School.
“Everyone had tears in their eyes and I didn’t know who half the people were,” Smolak remembers about the day her son returned to school, “but everyone knows Nicky’s story.”
Wilson’s staff and students know about Bellweber because though he had physically been gone from the classroom, his spirit was kept alive at the school. Minneapolis Children’s Hospital Child Life Services had spoken with his classmates in Cecilia Clark’s first-grade classroom about his condition and Clark included Bellweber in activities, such as sharing Valentine Day’s cards while he was gone.
Denise Whitaker in the media center collected Bellweber’s favorite books for him. And Diane Henning, Wilson’s principal, visited Bellweber at home and brought him his favorite school lunch.
Henning said when she learned about Bellweber’s condition last summer, she met with Smolak about what school staff could do to help. A “504 Plan,” which refers to the law which requires schools to provide reasonable accommodations for children with disabilities so that they can fully participate in regular education classes, was created.
Henning was committed to helping Bellweber and his family retain “a small shred of normalcy” during their challenging time, she said.
“When Nic could no longer attend school, we did not want to sever our relationship with him and his family; they were still part of our Wilson school family,” Henning said.
“We needed and wanted to be part of the safety net/support system for them as they were going through such an enormously difficult time in their lives. Staff members and students reached out in ways that seemed comfortable and ways that hopefully would ease the family’s burden in some small way.”
Henning is proud of the school’s staff and the efforts they made to reach out to Bellweber and his family.
“We all wanted Nic and his family to stay connected with Wilson in any way possible and for them to know we truly were on ‘Nic’s team’,” Henning said. “Reaching out in a caring way did not surprise me; the Wilson School community is a very caring place.
“Children and adults collectively strive to make a difference for others who need our care and support in the community and the world. Here was a time where that ‘someone who needed us’ was part of Wilson Elementary School.
“We are so thrilled that Nic is back at school with his first-grade class. The day he returned, it was so delightful to see his classmates’ responses. Smiles and cheers were in abundance throughout the building following the sharing of that good news during morning announcements.”
Clark said her students were ecstatic when they learned Bellweber was returning to the classroom.
She also looked forward to Bellweber’s return.
“I just want everyone to know that Nic has been dealt a hard thing, but he is so determined to make life awesome,” Clark said. “Nic is an inspiration to the work I do in that classroom and the respect my students are beginning to have for each other as the days go by. A big thank you goes to Nic’s family for letting me be a part of something so special.”
According to Smolak, she is incredibly grateful for the support she received from Wilson.
“They are very genuine people; they are doing what they are doing because they want to, not because they have to,” Smolak said. “They have very big hearts.”
Bellweber, who turns seven this month, continues occupational therapy, will visit his oncologist every three weeks and will have MRIs every three months. While the future is unknown and it’s very possible the tumor will grow back, Smolak is thankful for the time her son has been given.
“The doctors cannot explain to me what happened; I think it was a miracle,” Smolak said. “I haven’t been able to say that word out loud because it sounds corny. But what other explanation is there? God listened to our prayers.”