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Noah Oakley, 5, has been fighting brain cancer since age 2
CHILTON — Five-year-old Noah Oakley hasn't met a toy train he didn't like. Red ones, blue ones, wooden ones, plastic ones. They all have fun written on them.
Fun is something that Noah, son of Keith and Sheila Oakley, members of Good Shepherd Parish, appreciates - probably more than all of his kindergarten classmates at Chilton Area Catholic School. That's because Noah has been battling brain cancer since he was 2.
Noah was first diagnosed with a brain tumor on June 21, 2005. One month later, he underwent a nine-hour surgery at Children's Hospital in Milwaukee to remove the tumor and spent 13 days in recovery.
Keith and Sheila Oakley are pictured with their children Noah, 5, and McKella, 4. Noah was first diagnosed with brain cancer when he was 2. After two surgeries and a six-week treatment with radiation therapy, the family awaits Noah’s prognosis. Sam Lucero photo
An MRI in December of 2006 revealed a new tumor growth and Noah underwent a second surgery on Feb. 15, 2007.
As a result of the first surgery, Noah lost his pituitary gland, which produces hormones that control growth. He will require growth hormones the rest of his life and his vision may also be impaired.
Sixteen months after his second surgery, Noah underwent another MRI. Again, a new cancer growth was found. This time, surgery was ruled out because the tumor was on the carotid artery of his brain.
Instead of surgery, Noah underwent TomoTherapy, a newer form of radiation therapy. The treatment process took place at Froedtert Hospital in Milwaukee and lasted six weeks. Noah was admitted to Froedtert on Dec. 6, 2008, and was released on Jan. 14, 2009.
One week after his release, Noah returned to school, where classmates enthusiastically welcomed him back. According to Sheila Oakley, Noah was to return to Children's Hospital on Wednesday, Feb. 18, for another MRI to determine the radiation treatment's success.
During an interview with The Compass on Feb. 4, Oakley talked about her family's journey with cancer, the toll it's taken on them emotionally and financially, and how their faith has given them strength to continue.
The journey begins
Their journey began on Mother's Day 2003, when Sheila received a very special gift: the birth of her firstborn child, Noah William. By the time Noah's sister, McKella, was born one year later, Noah was suffering from gastrointestinal problems, fevers and having difficulty sleeping.
Oakley spent months trying to help her son, giving him different types of medication and changing his diet. "I found that staying away from processed items did help him, but did not cure the problem," she said.
Visits to her pediatrician did not resolve the problems. "I was told by the doctor, as well as the gastroenterologist, that I was an overprotective mom and that I needed to learn to relax," said Oakley. "But I said, ‘It's not like that. Something else is wrong.'"
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Sheila Oakley says her son Noah is her little angel. See slideshow here.
Noah began experiencing seizures.
Noah's pediatrician in Fond du Lac recommended that Noah see a neurologist at Children's Hospital in Milwaukee for an EEG (a recording of electrical activity in the brain). Tests were conducted in November 2004, but since Noah's seizures were sporadic, nothing was discovered, said Oakley. A follow-up appointment was scheduled for March 2005, but was delayed until May 2005.
Noah's follow-up EEG examination revealed nothing, said Oakley. "Everything was normal," the neurologist told them. "He said, ‘I don't know what to tell you. We still don't have an answer why he is having the fevers. What do you want to do? It's up to you.'
"I told the doctor I wanted an MRI done and if there's something wrong with my son I'll deal with the consequences. If not, I'll walk away and respect the fact that this is how I have to live," she said.
The MRI took place June 21, 2005, at Children's Hospital in Milwaukee. The following morning Oakley received a call she "never in a million years" expected.
"Dr. (Michael) Schwobe came on the line with us and said, ‘Your son has a brain tumor and you need to be down here tomorrow. ... We need to move forward on this rather quickly."
Two days after the MRI, Keith and Sheila and their two children were back in Milwaukee. "We spent three days down there ... having blood work done and different procedures," said Sheila. "They showed us the tumor. It was about the size of a quarter and it was located in the hypothalamus area. Keith and I tried to do our homework, but yet try to comprehend that our son has cancer."
One month later, Noah underwent brain surgery. "I think the hardest part, besides taking the understanding that your son has a tumor, was handing your son over," recalled Sheila. "We met all of the nurses and anesthesiologists who were going to be in the surgery room and they all stood there and said, ‘Are you ready?' and we said ‘Yes.' That was hard because you didn't know if you'd see your son again."
It was the first time the Oakleys had to face that fear. However, it wasn't the last.
"We came home after 13 days and had about three or four weeks' worth of continuous blood work, either daily or every other day," she said. "Then we followed up with monthly MRIs that moved to every three months."
The Oakleys thought the worst was over because Noah's previous health issued ended. He even started taking daily growth hormone injections.
"It was like a night and day difference after that first surgery," said Oakley. "He didn't have any high fevers or any gas problems. It was like a new child."