Cailen Rundles had regular headaches, leg and back pains and vision problems as a second-grader. He “threw up all the time for no reason,” his mother, Elizabeth Burnett Rundles, said.
Seventeen trips to the doctor during that year found nothing. But an MRI April 13, 2013, revealed Cailen has chiari malformation, for which there is no cure.
In two years and four months, he had five brain surgeries.
Despite those problems, he has kept up with his classmates and is now an 11-year-old fifth-grader at Mount Vernon Exploratory School.
He had two surgeries April 27 and is recovering at Scottish Rite Hospital in Atlanta, where he is expected to be for another few weeks, his mother said.
After that, he will have to have outpatient therapy for four to six weeks. Then, there will be therapy at home.
His mom said, “We’re hoping to stay in the Ronald McDonald House Monday through Friday and just come home on the weekends.”
Cailen’s fifth-grade homeroom class — with “Mr. T,” Kevin Thomas, as teacher — came up with events at school to help the family.
Mount Vernon has raised more than $2,200 for Cailen and his family. That includes $1,000 from Syfan Logistics of Gainesville and $750 from the “snow cone” event at field day May 12-13. The company, “Snowie of Georgia,” donated 70 percent of the proceeds for Cailen, she said.
The school held Pajama Day Friday to raise more money. “We can practice for awards day in our pajamas,” Principal Connie Daniels said. Students donated $1 to wear pajamas. A “hat day” also was held with similar donations.
Daniels said some students prepared homemade treats to sell in their neighborhoods, and some parents agreed to match what the individual classrooms raise.
Pies to the face are likely in the works for Thomas and Daniels as a “reward” to students for raising the money.
Daniels said the proceeds will be used to purchase gas gift cards or restaurant gift cards to assist with food and transportation costs.
The April surgeries included complications, his mother said. After the surgery, Cailen had “limited mobility on his right side, affecting his speech, walking, and moving anything on his right side,” Rundles said.
Reaching the diagnosis, and then trying to understand potential treatment was stressful and confusing, Rundles said.
“His (original) doctor knew nothing about the condition and sent us to a neurosurgeon in Atlanta. I begin to research chiari day and night and met people on support groups online and realized that not many doctors truly know chiari and all the related conditions that go with it.”
Cailen’s parents took him to doctors in Atlanta but also were trying to take him to The Chiari Institute in Great Neck, N.Y.
“A true specialist in chiari is hard to find,” Rundles said. She said she “went to the computer and I typed in chiari malformation, and it pulled up a map with little pins that were very few and far between.”
The pins represented doctors who treat the disease. One was Ian Heger, who is pediatric neurosurgery section chief at Augusta University Health System.
“We decided to see him before going up north,” she said. He is Cailen’s doctor.
The first “brain decompression” was Dec. 9, 2013. “His surgery went great and he began to improve some. Around Christmas things started going downhill again,” his mother said.
Cailen had an infection and “high pressure in his head.” He was hospitalized from Jan. 9, 2014 to March 6, 2014. During that time, he had two more brain surgeries.
“He did good for the most part after finally getting out of the hospital,” Rundles said. “He still had headaches and body pain, but he will always have that from time to time because there’s no cure for chiari.”
Cailen did OK until December 2015 when he started having daily headaches again. “Getting to school became a struggle again,” Rundles said.
More tests showed instability in his neck — and a probable fusion surgery at some point. Cailen felt worse and Heger decided to do a lumbar puncture to check the pressure on his brain. That was April 27.
“After that test, I was told he was in shunt failure and would be having brain surgery that day. I called his dad who was in Maryland working and he got on a plane to head home,” his mom said.
The first surgery led to a second “because the shunt went straight through the ventricle and hit the left side of his brain,” she said. “This left him unable to move the right side of his body.”
Teachers and administrators from the school visited Cailen last week at Scottish Rite.
“One thing about Cailen – we were all very impressed with just his positive attitude. He’s never once said ‘oh woe is me.’ He’s always positive,” Daniels said.
Rundles agreed, calling her son “strong willed” and said he “wants to walk and use his arm again.”
She added, “There will be more surgeries down the road for him, but that’s life with chiari. It has changed our life forever.”
The school teachers and students also think about him, Daniels said.
“Everybody here adores him. The children are always asking us about him. They miss him,” she said.