MESA, Ariz. — Just like his favorite cartoon character Scooby Doo, Kyle Oden is afraid of ghosts. But besides that, not a lot else seems to faze this Mesa 4-year-old, who began 13 months of chemotherapy — with an abundance of energy and few side effects - when he was only 2.
It began when the then-toddler went in for his two-year check-up. Kyle Oden's slightly bulging right eye worried the pediatrician, who sent him on for further testing.
"We thought he had a lazy eye," said Brittney Oden, Kyle's mother. "I was thinking he might need an eye patch or glasses."
What followed were appointments with an optometrist, then an oncologist and a geneticist.
Kyle had a brain tumor behind his right eye on his optical nerve, his mom said. Eye tests showed that Kyle was essentially blind in his right eye.
It was caused by Neurofibromatosis (known as NF, or NF1), a genetic neurological disease that causes reoccurring tumors along any nerve in the body, according to the National Institute of Neurological Disorders and Stroke. Severity of the disease depends on the location and size of the tumors. It is nearly always discovered in children.
"NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution," according to the Children's Tumor Foundation website, a non-profit that advocates for NF. It is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined.
"Phoenix Children's (Hospital) was great," Oden said. "Kyle thought he was on vacation, it was so great. Sometimes he even asks when he gets to go back. He loves his nurse, Annie."
Treatment went according to plan for most of the 13 months. Kyle did four weeks of chemo treatments followed by two weeks of rest, his mom said.
"He didn't lose his hair and he was just as energetic as this," Oden said of Kyle during his treatments, gesturing to him as he flopped around nearby with two large Scooby Doo stuffed animals. "You never would have known he was sick."
It wasn't until the final two weeks of treatment when Kyle had negative side effects, Oden said. He developed an allergic reaction to his chemo.
"It was my two worst fears all at once," Oden said. "He had an allergic reaction and had to have a blood transfusion."
The tumor stopped growing with chemotherapy, but Kyle's eyesight was never regained, Oden said. However, the swelling that caused his right eye to bulge went away. In January 2010, the family learned that Kyle would be permanently blind in one eye.
To protect his left eye, Kyle wears a pair of bright green glasses; he got to pick out the color.
"My favorite color is green," he said with a smile.
Through all of the challenges, Kyle doesn't seem to let anything get him down. In 2010, Kyle was adopted by the ASU football team as an honorary member through the Friends of Jaclyn Foundation, a non-profit that matches kids with brain tumors to athletic teams. He has his own personalized ASU jersey and locker in the football locker room.
Through the team, he has made a lot of friends, Oden said. One of the player's families that Kyle got especially close to gave him a box full of Scooby Doos of varying sizes.
"There must have been 20 in there," Oden said laughing.
Conceiving a child was difficult for Brittney and Bennett Oden. The two spent years trying. Through fertility drugs, the couple was finally able to get pregnant — originally with twins. Still early in the pregnancy, they were told one twin no longer had a heartbeat.
With the birth of Kyle, it finally seemed like the family the Odens had wished for years had started. Yet before they could consider having another child, Kyle was diagnosed with NF.
"I always wanted at least one more child," Oden said. "But when your kid is fighting cancer and your husband is 13 years older...."
The two became content with their "miracle baby." Especially when they found out that any baby of theirs would have a 50 percent chance of also inheriting NF.
"I completely forgot when I was first asked by the doctor if there was a family history of NF," Brittney said.
Her husband has NF, but his condition is so mild, it completely slipped her mind at the time.
Bennett Oden had been diagnosed with NF as a child. His tumors had mainly been limited to just under his skin. Besides some occasional pain from a tumor that doctors won't remove because of its proximity to a large artery, life for Oden is normal.
The first year after chemo ended, Kyle had an MRI every three months to check for new or changing tumors, his mother said. Last year, he was checked every four months and if things go according to plan next month, he will only have a MRI once every six months.
In all, Oden believes she and her husband have spent anywhere from $20,000 to $30,000 in medical expenses, even with good insurance.
Last summer, the Odens lost their home to foreclosure; the family was unable to get a loan modification. With so many medical bills, it was hard to make ends meet.
"We didn't want to leave, it was down the street from where I grew up," Oden said. "It was the place we planned to raise our children."
But good things may come from misfortune; without a mortgage to pay for, Oden was able to quit her job, return to being a full-time college student and stay home with Kyle, reducing childcare costs.
"I know that Kyle is going to need an advocate (when he starts kindergarten in the fall)," Oden said. "The best way to know the system is to be a part of it."
NF is often accompanied by learning disabilities and while Kyle isn't behind yet, Oden wants to know how to help him if he does.
That's why she plans to finish her degree in special needs teaching. It will further the goals she has already started in helping further research and education of NF.
Currently Oden is the Phoenix affiliate for the Children's Tumor Foundation and this year she plans to continue the second annual Spring for a Cure event to benefit the foundation.
The event is a family carnival that includes face painting, arts and craft venders, ASU's Sparky the Sun Devil, a bounce house and food.
It also is place where families affected by NF can have a chance to meet, share stories and network.
Oden eventually hopes to open an advocacy center that will provide tutoring for kids affected by NF, teach parents how to help their kids with schoolwork and to network parents.
Information from: East Valley Tribune, http://www.eastvalleytribune.com