First-grader with inoperable brain tumor pushes forward to beat odds
Submitted photo / Sherwood Gazette
Nicholas Getty, an Archer Glen Elementary Student, gets a hug from Eddie the Eagle, the school's mascot.
Nicholas Getty, who attends Archer Glen Elementary School, looks and acts like any other first-grader at the school, which is a piece of normalcy his parents want to preserve because he has an inoperable brain tumor.
In fact, when Nicholas started kindergarten last year, his parents only told those who needed to know, including administrators and his teacher, so he could just be a normal kid.
However, his parents, Chris Getty and Jennifer Fitch, reluctantly agreed to go public when friends offered to fund-raise to help pay Nick’s medical bills. The family has health insurance, but it doesn’t cover all the expenses of monthly chemotherapy plus multiple medications, doctors’ visits and hospital tests.
Nick, now 7, was born Oct. 7, 2001, and according to Jennifer, “he was never a sick kid.”
Then in the spring of 2006, “he showed signs of a cold,” Jennifer said. “He was fatigued and nauseated. He had a loss of balance and equilibrium problems.
“It was almost like he had a stroke on one side. It happened really fast. Within 1 ½ weeks, he was in intensive care.”
One June 12, 2006, — a date Jennifer will remember forever — Nick was diagnosed with an inoperable brain tumor following an MRI.
The diagnosis only came after Jennifer insisted on getting a second opinion after Nick’s primary- care doctor said the symptoms were either caused by a stomach ailment or the child was making it up to get attention.
The second doctor thought Nick’s ears might be infected but ordered the MRI, which showed the tumor, and Nick spent one week at Legacy Emanuel Hospital & Health Center in Portland.
Nick started three months of daily radiation and also began monthly chemotherapy treatments, which he still undergoes.
“They do a scan every other month to monitor the tumor,” Jennifer said Oct. 25. “It has shrunk, and so far, it’s been stable. We’re thinking the chemo is keeping it the same size. Nick was originally supposed to be on chemo for one year.
“He’s in a study, and he’s tolerating it well, so they are continuing the chemo into the second year. He only had a side effect one time, when they raised the dosage, and it was scary. They just raised it again this week.”
The tumor is actually inside Nick’s brain stem, so surgery to remove it is out of the question. “Even a biopsy could kill him,” Jennifer said.
She has researched the condition and learned that it is very rare – it only affects 1,500 to 2,000 children under the age of 12 annually across the country.
“Only 5 percent survive,” Jennifer said. “Most kids only live two to five years. But he’s in a study, and the doctors are gaining knowledge all the time.”
The chemo that Nick takes is an oral drug in pill form, and Jennifer gives it to him monthly.
“It’s such a new medicine that there’s no study of the effects,” Jennifer said. “And who knows what new drugs will come along? We’re ready to try something else new if it becomes available.”
Nick goes to Emanuel once a month for blood work before Jennifer gives him the chemo five days in a row.
“It’s two pills, and they’re really big,” she said. “You can’t cut them, and I’m supposed to wear gloves when I handle them.”
As for how or why the tumor started, Jennifer said that Nick could have been born with it and something triggered it to start growing.
“Since they can’t biopsy it, they can’t say for sure that it’s cancer,” she said. “But I know that with lots of brain tumors, they come back stronger after they’re operated on.”
As Nick recovered from his original stroke-like symptoms, which were caused by the pressure of the tumor, he needed speech, physical and occupational therapy.
“We couldn’t understand him, and he couldn’t walk,” Jennifer said. “He had neurological testing one year after the radiation.”
She quit work when he was diagnosed, although her insurance was covering the family, and she didn’t work for two years. The family then went on COBRA until Chris’ insurance started covering the family.
“Insurance only pays $1,000 per prescription, and we exceed that every month,” Jennifer said. “Every month, Nick takes steroids and pre-chemo medications, and he takes antibiotics three times a week.
“He takes eight days of steroids after the chemo, and he changes. Just when he’s back to his old self, it’s time to start again.”
With all that going on in his young life, Nick is still a normal first-grader.
“He’s a good kid,” Jennifer said. “You would never know he’s got something seriously wrong. That’s why we didn’t tell people at school – because we wanted him to go to school and be a normal kid.
“He knows he’s sick. He says he has an owie in his head. I don’t want people to baby him like his mom does. I’m a little overprotective. We have our ups and downs. I go into my room and cry when I can’t take anymore.”
One of the highlights of an otherwise grim two-year period was a five-day trip to Southern California courtesy of the Make a Wish Foundation. In January 2007, the family went to Disneyland, Sea World and Legoland.
“It was the most amazing trip,” Jennifer said. “He loved it. We got to do behind-the-scenes tours. We had a great time. They make it so special for the kids – limousines, the whole bit. He was ecstatic. He wants to go back.”
Back in the real world, Jennifer worries about all the illnesses Nick can be exposed to at school. “At that age, they’re walking germs,” she said.
Jennifer gets notified if anyone in Nick’s class gets sick with such illnesses as chicken pox or strep throat.
“If he got something like that, we would have to hospitalize him,” she said. “We go through a lot of hand sanitizer.”
But all the effort is worth it, according to Jennifer.
“I have a great kid,” she said. “He’s already amazed his doctors. He has done so much better than they thought he would. They weren’t that promising at first. He’s my only child, and he’s not going to be taken from me easily.”