By Renee Worthing 

Staff Reporter

The Sayer family of Kennebunk is facing a daily drive to and from Boston for six weeks in order for 5-year-old Olivia to undergo radiation therapy for a recurring brain tumor.

Beginning April 3, Olivia will undergo proton radiation every day for six weeks at Francis H. Burr Proton Therapy Center at Massachusetts General Hospital. 

“It’s [proton radiation] only done in five places in the country,” Olivia’s mother, Ryan Sayer, said. “For pediatrics, it’s even fewer.”

Olivia will get a reprieve on weekends.

Ryan Sayer said proton radiation doesn’t cause as much damage to the tissue as traditional radiation.

“It attacks the DNA of the tissue,” Ryan Sayer said. “It has better results.”

Ryan’s husband, Jason’s insurance covers most of the costs of the surgery and other medical treatment, it does not cover the cost of gasoline and other travel expenses associated with the daily drives to Boston for Olivia’s treatment.

“He will have to take time off from work,” Ryan Sayer said.

Parents and children at the preschool Olivia attends are very supportive of Olivia and her family, Little Bear Preschool Owner Amanda Stevens said.

She said each child took home a bowl-a-thon sponsor sheet and “hit up” family and friends for sponsorships.

“Each child raised between $100 and $200 each,” Stevens said. 

She said people were very generous with their donations and estimated the children raised about $2,000.

The preschoolers and their families have helped the Sayer family before.

This is the second time Olivia has been diagnosed with a brain tumor.

Her mother Ryan said when Olivia was two years old she began to complain of headaches.

She said the doctors couldn’t believe the little girl complaints because most children that age don’t acknowledge headaches and their limited vocabulary prevents them from identifying the pain.

Ryan Sayer said she is grateful Olivia was an “early talker” and able to tell her about the headaches.

She took her daughter to the doctor, but as the headaches became progressively worse and after ruling out allergies and ear infections as possible causes of the headaches, the doctor scheduled a CT scan. The test revealed a tumor the size of a lemon on top of her pituitary gland, her mother said.

She said the neurosurgeon was amazed Olivia was functioning as well as she was.

“Most people have other symptoms of a tumor like throwing up, dizziness and falling down,” Ryan Sayer said.

The non-cancerous tumor was removed during an 11-hour surgery, but it damaged her pituitary gland, which is responsible for growth, development and reproduction. As a result, Olivia now takes several medications.

“Her development is fine, but we had to learn to deal with all the medications,” Ryan Sayer said.

Doctors continued to monitor Olivia for the next three years with routine MRIs every three to six months.

Last November, doctors discovered another tumor growing.

In February, Olivia underwent another surgery, but this time the surgeon was unable to get to the tumor.

“It was imbedded in scar tissue,“ Ryan Sayer said, adding it is also under the optical nerve.

“The surgeon didn’t want to compromise her vision,” Ryan Sayer said. “She could have had a stroke, too.”

The new tumor is non-cancerous, but will continue to grow. If left untreated and because of its location, it could interfere with Olivia’s vision.

When Olivia had surgery in February, one of the mothers at the preschool contacted Project Linus, an organization that provides blankets for ill, traumatized children and children being admitted to the hospital.

Stevens said Project Linus not only provided a blanket for Olivia, a blanket was provided for each child at the preschool.

“When Olivia was at the hospital in February, the children could see her on the Web site,” Stevens said. “Olivia had her blanket and the children had theirs.”

The children were told if they hugged their blanket, they would feel close to Olivia.

In addition to the bowl-a-thon, families of the preschool children as well as members of the church the Sayers attend are organizing a “food chain.”

People signed up to deliver food to the Sayers every evening during the six weeks Olivia will be having treatment in Boston. She said the food delivery will enable the family to enjoy family time with Olivia and her two younger sisters, 1-year-old Eliza and 3-year-old Emma.

“Ryan has so much going on already, she shouldn’t have to worry about the small stuff,” Stevens said.

Another benefit is slated for April 5 from 11:30 a.m. to 5 p.m. at Champion’s Sports Bar in Biddeford.  The evening will feature music by Juniper Blues and 12-pack Handicap as well as 50/50 drawings and other raffles.

Donations can be sent to: Olivia Sayer, Ocean Communities Credit Union, P.O. Box 37, Kennebunk, ME 04043   Attn:Kathy

To contact Renee Worthing, email news@kennebunkpost.com or 282-4337 ext. 240