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Family solving puzzle of son's brain cancer

Published: Saturday, May 10, 2014 11:31 p.m. CDT
Caption
(AP Photo/The Pantagraph, David Proeber)
Three-year-old Caleb Coombs builds a puzzle with his mom, Lora, on April 9 at their home near Lexington. Caleb is recovering from a rare brain tumor called anaplastic ependymoma. Systematically addressing challenges, whether it's solving a puzzle, re-coupling toy trains or improving in speech and physical therapy, is nothing new to Caleb. Once you've survived a rare brain cancer and treatment, puzzles, train wrecks and relearning how to swallow and walk in a straight line are all in a day's work.

LEXINGTON – Caleb Coombs methodically reached for puzzle pieces and put them in the correct spots.

After quickly assembling the fire truck puzzle, he shoved it aside and moved to another one.

"He's really good at working puzzles," Lora Coombs said of her 3-year-old son.

Systematically addressing challenges – whether it's solving a puzzle, re-coupling toy trains or improving in speech and physical therapy – is nothing new to Caleb. Once you've survived a rare brain cancer and treatment, puzzles, train wrecks and relearning how to swallow and walk in a straight line are all in a day's work.

"To look at him now, it's hard to tell what he's been through in just six months," his father, Chad Coombs, said April 9 in the family's rural Lexington home as Caleb played with his trains.

"Unless you'd see the button in his belly (covering the port where he takes nourishment) or the scar on the back of his head (from his brain surgery).' "

What happened to Caleb was a diagnosis of anaplastic ependymoma, a brain tumor of which there are only 200 cases nationwide each year; a nine-hour surgery to remove the tumor; 30 treatments of proton beam radiation therapy; speech and physical therapy; and follow-up testing and monitoring that should continue – if everything goes according to plan – into adulthood.

"Normally, he is sweet and fun-loving," Lora said as Caleb smiled while assembling his second puzzle.

"But he has a stubborn streak a mile long," she continued as he shook off a feeding through his port.

"But that's OK. The doctors said the kids who are stubborn pull through this better than the kids who aren't."

"He is doing wonderfully," said his pediatrician, Dr. Aaron Traeger of Advocate Medical Group Pediatrics-Bloomington.

But the Coombs family knows this puzzle began only six months ago and they're now in "wait and watch" mode.

Caleb was born on March 15, 2011. Late last September, Lora and Chad noticed that Caleb's head was tilted to the left from time to time and that he sometimes didn't walk in a straight line.

"We would say 'Caleb, you're not a drunken sailor,' " his mother recalled.

They took him to Traeger, who found Caleb had an ear infection and prescribed an antibiotic.

But even after Caleb had been on the medicine for a week, his balance problems remained and now were joined by headaches.

"He'd wake up screaming in the middle of the night, rubbing the back of his head and yelling 'Head hurt,' " Chad recalled. "He wasn't getting any sleep. We weren't getting any sleep."

They returned Caleb to Traeger on Oct. 7 and he immediately ordered blood work and a CT (computed tomography) scan of Caleb's head. "Since the ear infection was gone, he wanted to know what was causing this," Chad recalled.

Traeger got the results that same day and the Coombses returned to his office.

"He said 'No matter what I tell you next, remember that Caleb's going to be OK.' I have lived the last six months by those words," Lora said.

"He said 'Caleb has a tumor on his brain. They are expecting you in Peoria (Children's Hospital of Illinois at OSF Saint Francis Medical Center),' " Lora recalled.

"It was pure shock. We drove to Peoria in dead silence."

At Children's Hospital, a pediatric hematologist/oncologist confirmed Traeger's diagnosis of an anaplastic (cancerous) ependymoma.

Ependymomas are tumors that arise from cells lining the ventricles (the fluid-containing spaces within the brain), according to the Childhood Brain Tumor Foundation. As they press on the brain, they cause headaches, imbalance and tilting of the head.

Ependymomas are rare. While one to two in 10,000 children get cancer, 30 percent of those have brain tumors, and 6 percent to 12 percent of them are ependymomas, Traeger said.

On Oct. 10, a surgeon at Children's Hospital removed the tumor in a nine-hour procedure. This was impressive because the tumor was embedded in nerve endings and was important because those nerve endings affect Caleb's breathing, swallowing, balance and facial muscles, his parents said.

"They classified it as a gross total resection and verified that they got everything, which was good news," Lora said.

But because of the procedure's impact on the nerve endings, Caleb temporarily lost his ability to swallow and a vocal cord was paralyzed.

Caleb was at Children's Hospital for 48 days. Chad took two weeks off work from Case New Holland in Goodfield. Lora took three months of family medical leave and 2½ months of personal leave from Country Financial in Bloomington.

Following surgery, radiation was recommended in case cancer remained at the cellular level. The treatment protocol called for photon radiation, the Coombses said.

But after consulting specialists at Children's Hospital and elsewhere, they opted for lower-dose, proton beam radiation. Proton radiation doesn't radiate all the way through the body and affects less healthy tissue, thereby reducing the risk of side effects, including vision loss, hearing loss, dental problems and developmental delays, Chad said.

Caleb underwent 30 proton radiation treatments – from Dec. 23 through Feb. 4 – at CDH (Central DuPage Hospital) Proton Center in the Chicago area. Meanwhile, he had speech therapy to improve eating and swallowing and physical therapy to improve lower body movement.

Since returning home, Caleb has continued therapy at Easter Seals in Bloomington and his improvements have been steady, his parents said.

His balance appears back to normal and, while he doesn't sprint yet, he can jog and jump. His swallowing and eating have improved and he now takes most of his nourishment by mouth rather than through the port in his stomach. Developmentally, he has nearly caught up to where he should be for a 3-year-old.

While follow-up testing and monitoring will continue, Caleb's parents know he's doing well considering everything he's been through in the past six months.

"We've been very blessed," Lora said. "We hope nothing reappears but we know nothing is guaranteed."

"The literature says he has a 70 to 80 percent, five-year survival rate," Traeger said. "Will he go to college and lead a relatively normal life? We have no reason to believe otherwise."

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