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.
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.”
Second tumor discovered
Their optimism was tempered when a follow-up MRI in December of 2006 found additional growth.
The second surgery on Feb. 15, 2007, took six hours. Five weeks later, Noah was back in the hospital to remove fluid from the brain. “We spent another three days in the hospital and came home,” said Oakley. “Then it was fine. We just continued through routine checkups and didn’t have any issues with fluid after that.”
Noah was also taken off growth hormones because of a concern that they contributed to cancer growth.
More checkups proved positive for Noah until a routine MRI in June 2008 revealed new growth on the carotid artery. Radiation treatment was the only option.
In preparation for treatment, another MRI was taken on Nov. 4, 2008. It showed additional cancer cells on the lateral wall of the sella turcica, near the brain’s base.
Treatment began Dec. 6 and took place every day for six weeks except weekends, Christmas and New Year’s Day. Instead of being sedated for treatment, Noah asked to stay awake.
“The whole process takes about a half-hour. He laid still for all of it, and for 29 days he did fabulous,” said Oakley. “He was the inspiration of the department because … Noah was the youngest patient to ever stay awake during the actual process of treatment. It was emotional, our last day there.”
Oakley said she and her husband are realistic about Noah’s condition.
“With radiation, even though we’ll go and have the MRI (Feb. 18), we’re still going to see this spot there on the films, but we’re hoping that it’s either shrunk a little bit or down the road, in a year, that it’s not grown. It’s not going to be like at surgery, when we removed it. The tumor mass will still be there, but hopefully it’s dead, that the radiation killed it.”
Trusting in God
As they wait for the latest update, Oakley said their trust is in God.
“We believe it so hardily in our mind and body that God has helped us through this and he continues to help us,” said Oakley. “In the process of all this, we have really become deeply more passionate about saying thanks to God and thanks to our Lord, that nothing more precious could ever be bought or purchased than having us as a family,” said Oakley.
She believes God has a special relationship with her son, whom she calls “our angel.”
One day after Noah’s first surgery, Oakley was playing “Simon Says” with her son. At the time they were renting a house while a new one was being built. “Noah was speech delayed and we were walking past a picture of the Last Supper hanging up in the dining room,” she said. “He stopped in his tracks and looked at it. I can still see him and hear him say, ‘I know you.’ And I thought, ‘What? I didn’t say anything.’
“We know (Noah) is here to teach us something and we are going to listen and we are going to learn,” she said. “And hopefully teach others and inspire them that life is so much a gift and that we shouldn’t take it for granted.”
When she needs an emotional lift, Noah has been there to offer it, said Oakley.
Prayers to St. Peregrine
As part of our series on Coping with Cancer, The Compass invites our readers to submit names of friends and relatives who are battling cancer. At the end of our series we will publish the names, along with a Prayer to St. Peregrine, patron saint of cancer patients. All of our readers are then invited to offer prayers for those listed. Send names to [email protected].
She recalled one evening, after a stressful day that included a visit with doctors in Milwaukee, she was putting Noah to bed. “He looked up at me … and said, ‘Mommy, don’t worry. Everything’s going to be OK.’ He put his hand on my cheek and I lost it. I’m like, ‘how did he know that I had this in me?’
“As we grew closer to the date of the second surgery, he said, ‘That’s OK, Mommy. Jesus is going to take my tumor away. Everything is going to be OK,’ and I’m like, ‘OK, I trust in you. I have faith that everything is going to be OK.’ For all the times that we’ve cried together as a family, he reassures us that everything is going to be OK and that we shouldn’t worry. So his spirituality has reassured us and has gifted us with a lot of understanding. And he’ll tell McKella the same thing, ‘Don’t worry, I’ll be back home, I’ll be here.'”
Like all other families touched by cancer, Oakley said her family’s lives are forever changed.
“Through this whole journey it has made me think. I’m a business person. I have a bachelor’s degree and I wanted to climb the (corporate) ladder. … And all of a sudden Noah was diagnosed. Nothing is more important to me than having my two children and my husband and being a family. It has changed our perspective on things; that money can’t buy you happiness.”
What money does buy is medical treatment, and the Oakleys have spent a lot. In addition, Keith and Sheila are presently unemployed, victims of a downward spiraling economy.
A costly battle
“Up until probably last September, we’ve done it on our own and now our resources are (depleted),” said Oakley. “The first surgery was over $10,000 out of our pocket and fortunately we had savings, we had 401Ks that we dipped into. The cost of growth hormone is extraordinary. In 2006, it was $735 every five weeks out of pocket. His medication now that he has been taking (three daily) is about $220 a month.”
Keith, who worked at Tecumseh Power Company in New Holstein for 15 years, lost his job in 2007 when the company moved its local operation overseas. He has since been taking continuing education classes. Sheila, who worked as project manager at Fisher-Hamilton in Two Rivers, left that job in 2007 to take over a local business. The move gave her a more flexible schedule to handle Noah’s medical visits. She ran the business for eight months before economic hardships forced her to close it.
The Oakleys now live off of the couple’s combined unemployment benefits while Sheila looks for a new job.
Learning to accept help
They have also learned to accept help from others.
“I’m learning that I need to allow other people to help,” said Oakley. “God has sent these good Christians to us and we have to allow them to help us through this cross. Keith and I have just recently tried to remind ourselves as the support comes in, that when our time is up, we’ll be able to give forward and be thankful.”
Their parish has offered a lot of support, including the Knights of Columbus and the home and school association. Parishioners have held fund-raisers and collected gift cards for groceries and gas. Even their pastor, Fr. Bob Kollath, has offered support.
“Fr. Bob had actually come to visit Noah before he was even a student at CACS. Noah was having surgery that weekend and Mrs. (Liz) Rollman, the principal, told him the situation and he drove down to Milwaukee on that Friday and met with us. We have a very, very special place in our hearts for Fr. Bob and what he’s done.”
While Noah has been the center of attention due to his health, Keith and Sheila also worry about their daughter.
“We worry how all this is going to influence her future and her personality because we have seen where she has rebelled from things because she didn’t get the attention,” said Oakley. “It’s amazing how beautiful of a young girl she is, because she’s had a lot of challenges. She can’t be a normal 4-year-old and she’s never going to be a normal 5, 10, 20, 40-year old.”
While they hope and pray for the best, Oakley said she and her husband must prepare themselves for the worst.
“We’ve talked about the burials and church services and stuff. You don’t want to talk about those things and yet we believe that when God chooses to take (Noah) home, he will be in a safe place,” she said. “I hope that we still have a long, long time before that comes, because there’s too much we want to enjoy together as a family.”
Editor’s note: Readers wishing to offer support to the Oakley family may do so by sending donations to “Oakley Fund,” Chilton Catholic Consolidated School, 62 E. Main St., Chilton, WI 53014.
Update: In an e-mail, Sheila Oakley, whose son Noah was featured in last week’s Compass, said Noah’s medical appointment on Feb. 18 went well.
“Noah’s MRI showed a stable result from radiation. As I stated previously, time is of the essence and time will only tell if radiation did what we hoped. As well as we continue to hope for no new other issues to deal with,” said Oakley.
In addition, Oakley said she is interested in speaking to groups, particularly parents, about childhood cancer and how parents’ concerns about their children’s health should not be minimized.
To contact Oakley, e-mail her at [email protected].