There were hours when Taylor Rehmeyer couldn't move. She lay on her back, pinned to a hospital table in the Roberts Proton Therapy Center in Philadelphia. A plastic mesh face mask immobilized her head and dug into her flesh as she waited to receive an emerging high-tech cancer treatment that would target the tumor in her brain.
Whether it worked won't be known for months. But what Taylor and her mother do know is that the cutting-edge treatment provides her the best hope for recovery.
Staff members gave her pain medication and did their best to keep her spirits up, sometimes to little effect.
"It was physically painful. The mask would literally push my face down," the Winlock middle-schooler said last week.
Her neck and head ached under the pressure of the mask, which was bolted to the table. She grew restless as the beam slowly burned exposed skin over her ear, where her hair had fallen out.
"She came out looking like net woman," said her mother, Karen Owen.
Taylor, 13, also is a pioneer. Earlier this summer, she became Roberts' first patient with a ganglioglioma — a rare form of brain tumor — to undergo proton beam therapy. The procedure shoots a precise beam of protons at cancer cells, sparing surrounding tissue from the lethal effects of X-ray radiation.
The 10-week regimen of weekly treatment inside the "gantry" — the sealed tunnel where the powerful rays worked away at her tumor — were hard to endure. But Taylor, her family and doctors believe it may be the only way to finally beat a tumor in her left temporal lobe when it appeared a third time.
Symptoms suddenly emerge
During Halloween 2005, when she was 6, Taylor suddenly fell out of a rocking chair. She fell into a deep sleep. The next morning, she began vomiting and started having seizures. The seizures became more frequent. She began sleeping erratically, fidgeting and making odd noises. A scan found an unidentified mass in her brain.
Within a few weeks, the diagnosis arrived: Taylor had brain cancer. Surgery to remove the tumor was scheduled.
"We were all really freaked out by all this. Was her brain frying while all this was going on? We don't know," Owen recalled.
The "resection" surgery removed a tumor the size of a golf ball along with some surrounding brain tissue. When she woke from the operation screaming, her family was glad she could still walk, talk and see. But before long, they realized she would never be the same again.
"I had this feeling like they were going to cut her head open, and everything that she was, was going to pour out of it. And that's kind of how it was. ... This child looks like Taylor. She walks like Taylor. She talks like Taylor. But this is not the child that went into surgery," Owen said.
Taylor looks and acts like a typical kid. She loves art and music. She plays basketball. But words slip out of her grasp, new concepts are hard to retain and reading is hard work. After her surgery in 2006, her peers made fun of her.
"They called me 'Tumor Girl.' They just teased me, calling me 'stupid, 'retarded'. Really mean words," Taylor recalled.
In 2010, just as life felt like it was finally returning to normal, the tumor returned. Taylor had a second surgery in October 2010.
"That's when I really started to panic, wondering, 'Was she was ever going to get past this?'" her mom said.
'I'm just going to die'
When the tumor reappeared for the third time in 2011, it was larger and more intertwined with her brain tissue than before. Between November and April, it doubled in size. Surgery was no longer an option because too much of her brain would have to be removed.
"It was really upsetting. I kind of broke down when they told me the news. It's hard to think about going through all of that again, but compared to some kids, I have it easy," Taylor said.
This time, the doctor said, she would need radiation. But a traditional form of radiation, known as Gamma Knife, threatened to do as much harm to her growing brain as would more surgery.
Taylor was ready to give up. She told her mother, "I'm just going to die. I don't want to have surgery. I don't want to have radiation," Owen remembered.
"On my watch, you're not giving up," Owen told her daughter.
"I promised she would never have to go through a treatment that robbed her of her quality of life," Owen explained.
She began working with doctors and Washington state insurance providers to get Taylor approved for treatment at one of the country's 10 Proton Beam Therapy treatment centers.
A way to limit the damage
Unlike X-ray radiation, proton beams don't spread to surrounding tissue. Because their impact can be more easily limited, they can be an ideal treatment for growing children, who often become susceptible to secondary cancers or deformities when treated with other forms of radiation, according to the National Association for Proton Therapy.
In June, the center's staff began by making Taylor a plastic mask that would immobilize her head while she underwent treatment — a vital step in ensuring that the intense rays would target her tumor and as little else as possible.
"They took me into a CT scan room, and they laid me down on a table and soaked this piece of plastic paper," Taylor recalled, describing a piece of white mesh that became flexible in water. The doctors stretched the mesh over her head, molding it to her face.
"To be honest, it felt like a wet pancake being stretched over your face," Taylor said.
The weeks in Philadelphia felt "like a vacation where you do something very serious," Owens said. Between treatments, they tried to visit family and sight-see, but Taylor was often too sick to do much.
"There were times when she just threw herself across the bed and said, 'Mommy, please just take me home!' She missed everybody," Owen said.
Encouragement from the warm, caring staff helped Taylor stick it out. A therapist who Taylor nicknamed "Little Man" "always made me laugh and giggle and stuff," Taylor said. "He practically made it fun for me."
After returning to Winlock just in time for the new school year, Taylor and Owen, who runs a business selling clothing on eBay, focused on readjusting to everyday life.
For Owen, the return to Winlock feels a bit surreal.
"I almost felt like like I've jumped out of one life and into another one again," Owen said.
Taylor is attending school part time, but the after-effects of radiation have left her "with a general feeling of 'ick'" so overwhelming that she sometimes sleeps 20 hours in a day. Her brain is still recovering, so many of the physical activities she loves remain off limits. And her future is uncertain.
They won't know for sure whether the PBT worked until February, when they will return to Philadelphia for Taylor's six-month brain-scan. For Owen, the months between now and then are filled with "scanxiety," but for Taylor, being able to focus on school, friends, errands and homework is a relief.
"I couldn't ask for more. Just to be a kid again and not have to worry about this," she said.