Curious Case of Camilla

Camilla (Photography by Crystal Hedberg Photography)

Spacing out. Drooling. Odd facial movements. It wasn’t normal, but it wasn’t super concerning. Until it was.

“We started noticing seizures—very focal seizures,” said Lindsey, Camilla’s mom. “The first thing I did was call Mayo Clinic—it is the best hospital in the world.”

Camilla’s grandfather suffered from a brain tumor and Mayo Clinic treated him, so Lindsey was familiar with the process. Unfortunately, her experience was necessary.

Mayo Clinic diagnosed Camilla with a brain tumor. It was originally considered benign, but there were significant complications. The doctors ordered a 48-hour electroencephalogram (EEG) to detect abnormalities in Camilla’s brain waves and electrical activity in her brain. The results were staggering.

“The EEG revealed eight seizures—almost all occurring in her sleep,” Lindsey said. “We didn’t even know it was happening at night.”

One significant issue was both of Camilla’s arms were moving during seizures, indicating that the tumor was likely near the motor skills area of her brain. Because of the location of the tumor, doctors were concerned about conducting a rather risky surgery. They told Kody and Lindsey that Camilla “may never walk again or it may be a long time before she does” and her “left side—face and body—may be numb or paralyzed.”

“That’s my baby,” said Lindsey. “I said: ‘I want it out of her.’ The sooner, the better.”

Surgery was successful, but doctors were still worried about her motor skills. The next morning…Camilla miraculously walked and her left side was functioning normally.

It wasn’t easy, but it was done. Until it wasn’t.

Lindsey, Delilah, Estelle, Kody, Camilla (Photography by Crystal Hedberg Photography)

Two weeks later, pathology revealed Camilla’s tumor was malignant and Grade III—it was cancerous, it spreads and it tends to come back. Her prognosis was three years.

“Our world was turned upside down,” Lindsey said.

Camilla needed proton beam radiation—33 treatments over seven weeks. Rochester is not particularly close to home and Kody and Lindsey have two other daughters.

“There were so many questions,” said Lindsey. “How do we do this? Where do we stay? How do we continue working through this? The news of cancer was so overwhelming, and the logistics made it more overwhelming.”

That is when a Mayo Clinic social worker told them about the Ronald McDonald House of Rochester. Kody and Lindsey didn’t know much about the Ronald McDonald House, but their stay would drastically impact Camilla’s recovery.

“When we moved into the Ronald McDonald House, everything changed for Camilla,” Lindsey said. “Instead of focusing on her therapy and all of her pain and fears, she focused on the Ronald McDonald House.”

Camilla made friends with kids of all ages; Lindsey felt supported by other moms. The family enjoyed activities and dinners. It became home.

“My other daughters also loved the House and wished they could join Camilla more often,” said Lindsey.

Camilla, Estelle, Delilah (Photography by Crystal Hedberg Photography)

Lindsey and Camilla moved in as the House finished its expansion. The family especially enjoyed the indoor activity room and outdoor plaza—for expending energy.

“I didn’t know what to expect and I was blown away,” Lindsey said.

Lindsey said the House eased their burdens on a very painful journey. Volunteers help relieve stress by doing anything and everything for children and families, including cleaning areas multiple times each day. Lindsey said the House is “spotless” and a “very safe place for kids undergoing cancer treatment.”

“Volunteers are all so loving, kind, and compassionate,” said Lindsey. “They all had a smile on their face and made us feel welcome.

“I hope I can volunteer at the House one day.”

Camilla’s case is not closed—she will come back every three months for a MRI. However, following surgery and proton beam radiation…it was all clear. There is no tumor. But the prognosis doesn’t change: because it is Grade III, chances are high it will come back.

Through it all, Kody and Lindsey have been impressed with Camilla’s attitude strength and resiliency. And it all started at the Ronald McDonald House of Rochester.

“When Camilla finished her treatment and rang the bell, she didn’t want to leave the House,” Lindsey said. “For her birthday, she wants to have a party at the House. She will never forget the friends she made, and continues to pray for them.

“The House is so special.”

Camilla (Photography by Crystal Hedberg Photography)