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Oak Harbor 3 year old battles brain cancer

The Phelps family, including Andrew, Mary, Hannah, Ben and Jacob, walk in an Oak Harbor park earlier this year. Jacob, 3, is recovering from brain cancer. His battle has inspired his parents to start a nonprofit foundation dedicated to raising awareness and funds for pediatric brain tumor research. - Photo by Sara Kauss
The Phelps family, including Andrew, Mary, Hannah, Ben and Jacob, walk in an Oak Harbor park earlier this year. Jacob, 3, is recovering from brain cancer. His battle has inspired his parents to start a nonprofit foundation dedicated to raising awareness and funds for pediatric brain tumor research.
— image credit: Photo by Sara Kauss

A little more than one year ago, the lives of one Oak Harbor family changed forever.

Ben and Mary Phelps’ 2-year-old son, Jacob, was diagnosed with brain cancer.

Today, the evidence of his struggle is difficult to miss. His left eye is covered with a large Band-Aid, a plastic breathing apparatus lodged into his trachea sticks out of his neck, and a tube from a little backpack he wears everywhere snakes down the front of his shirt and disappears into a device inserted into his abdomen.

It’s a heartbreaking image, like a snapshot taken from a parent’s darkest nightmares. But this is a story of hope, and one with a happy ending. Jacob, now 3, is doing well and tests indicate he is cancer free. And his parents, who have also been irrevocably stamped by the experience, are now engaged in new struggle.

But this isn’t a fight of life or death, but a mission of education and research. In May, they created the Jacob Phelps Foundation, a nonprofit organization dedicated to raising awareness and funds for pediatric brain tumor research. So far, they have generated about $9,000.

Some of it has been raised through sales of the “Recipes for a Cure” cookbook, which is composed of recipes by family and friends, while the rest has come from a variety of community events, from garage sales to participation in the North Whidbey Relay for Life in June.

“The Jacob Phelps foundation is a way for us to give back, to honor Jacob and his fight, and to raise awareness and funds for much-needed research,” Mary said.

While treatment techniques are improving, said Ben, there is still a lot about brain cancer that isn’t understood. For example, childhood ependymoma, the type of cancer Jacob was diagnosed with, is a disease in which cancer cells form in the tissues of the brain and spinal cord. But why they form is still largely a mystery.

According to the National Cancer Institute’s website, cancer is rare in children but brain tumors are the most common after leukemia and lymphoma. About one in 11 childhood brain tumors are ependymomas.

The underlying goal of the foundation is to raise funds for research that will lead to better and more effective treatments, and hopefully someday, the discovery of a way to prevent it. Having a family member diagnosed with cancer is rough, especially when it’s a young child.

“It was like an out-of-body experience,” Mary recalls.

In the summer of 2009, Jacob came down with what seemed like a simple case of the flu. Already a mother of two, with a third on the way, she had seen her share of sick kids and wasn’t concerned. Although the doctor said it was strep throat, his condition worsened over the next few days, and by July 24, Mary knew something was definitely wrong.

Vomiting constantly and unable to keep his balance, he was rushed to Naval Hospital Oak Harbor. This time he was diagnosed with hydrocephalus, a condition in which fluid builds up within the skull and puts pressure on the brain. Tests determined it was the result of the mass in the back of his head.

He was transported that day by helicopter to Children’s Hospital in Seattle for emergency surgery. Alone and pregnant, Mary admits she was scared, but the severity of Jacob’s condition still hadn’t really sunk in.

“I don’t think I understood until the doctor said he was going to have the American Red Cross get an emergency message to my husband to come home,” she said.

Jacob’s father, Ben, is a U.S. Navy pilot. On tour at the time at Bagram Airbase in Afghanistan, he was just stepping off the tarmac from a particularly tough mission when he got the news from a superior officer. At first he thought he might be in trouble for something that happened during the mission, he said. The new he got was far worse.

“The last thing you expect to hear is your son has a brain tumor,” Ben said.

The next six months were a horror. The mass on the back of Jacob’s skull, roughly the size of a baseball, was wrapped around his brainstem and proved extremely difficult to remove. In all, he underwent eight major surgeries, six weeks of chemotherapy, and more than 30 radiation treatments.

It was rough for the whole family. The Phelps spent months, including Thanksgiving and Christmas, living out of a Boston hotel while Jacob received special radiation treatment. Their youngest daughter, Hannah, was born and brought home to temporary housing next to Children’s Hospital in Seattle.

But it wasn’t all bad. The greatness of humanity and its generosity has been eye-opening if not astonishing. The hotel in Boston donated their entire stay, old friends not seen since school have volunteered to come help out, the family even gets cards from people they’ve never met.

While Jacob appears to be cancer free, the road to recovery has been long and isn’t over.

“It’s kind of a wait and see,” Ben said.

The patch over Jacob’s eye is the result of possibly permanent nerve damage to the left side of his face. The muscles in his throat have collapsed, which forces him to breath through a piece of plastic inserted into his trachea. It makes it difficult for him to speak and requires him to be fed intravenously from a container in the backpack.

Jacob will carry the scars that tell his tale for the rest of his life. But they are not the whole story. They don’t tell how he fought the disease with courage, that throughout all the horrors of the past year, he never lost his special smile which “lights up the room,” Mary said.

Just watching him play and roughhouse with his older brother Andrew, with all the zest and tenacity of any other 3-year-old despite his multiple handicaps, is a continual source of inspiration, Ben said.

“He just goes, goes, goes,” he said.

Join the battle

According to the Pediatric Brain Tumor Foundation, 3,750 children are diagnosed with a brain tumor in the U.S. annually, or about 10 per day. The Phelps family’s “Recipe for a Cure” cookbook is sold weekly at the Oak Harbor Farmers Market, or can be purchased directly online at www.jacobphelpsfoundation.org.

Contributions can also be made to “Team Jacob” when the Phelps strap on their running shoes again Sunday, Oct. 3, for the Run of Hope in Seattle. For more information visit the foundation’s website.

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