Boy's illness prompts research fundraisers

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COLUMBUS, Neb. (AP) — Sam Nahorny has dreams of being a bobsledder, an FBI agent and a firefighter.

He might add pitcher to that list once he takes the mound at one of baseball's most historic stadiums.

The 6-year-old will throw out the first pitch June 22 for a Chicago Cubs game at Wrigley Field and more than 100 fans from the area will be there to cheer him on from the stands. The group should be noticeable as most will be wearing gold or blue Sammy's Superheroes T-shirts.

The shirts, worn by children and adults, are a common sight around Columbus. It is a visual way to spread the message the Nahorny family has championed since Sam was diagnosed two years ago with neuroblastoma, a form of pediatric cancer.

Sam's parents, Erin and Chris Nahorny, and their friends created a nonprofit foundation called Sammy's Superheroes to help raise awareness and financing for childhood cancer research, an area Erin said is greatly underfunded.

"I'm very helpless with Sam's disease. There's nothing I can do to fix this or save him. We as Sammy's Superheroes are going to make a difference," Erin told the Columbus Telegram (http://bit.ly/1qgtmtD).

The group has raised thousands of dollars through fundraisers and donations, money that will help fund research focused on childhood cancer. The foundation recently gave its first contribution of $50,000 to The University of Chicago Medicine to help fund a study that centers on individualized chemotherapy treatment for tumors.

The university was selected because that is where Sam has received treatment. His latest visit there was in April to Comer Children's Hospital where he went through high-dose radiation therapy.

The therapy is called metaiodobenzylguanidine, or MIBG, and it involves injecting the patient with radioactive iodine that is delivered directly to the tumor. It is an option when other therapies don't work.

Because of the radioactive dose, the patient must be isolated in a lead-lined room until the radioactive levels go down.

Sam has been through chemotherapy and a stem-cell transplant to stop the progression of cancer that is in his bones and bone marrow. But nothing was working. The next option was MIBG therapy, which is only available at a few hospitals in the country.

The treatment in Chicago was the second time Sam has been through MIBG therapy. He had it previously done in Boston. It was difficult to tell if that had a positive effect, because Sam also had maintenance chemotherapy around the same time, Erin said.

This time, he won't. The family will wait to see if this therapy shrinks any of the cancer. There is hope that it will work as patients have a 30-40 percent response to it, Erin said.

Sam was the first patient to receive MIBG in Chicago. Even though his parents went through the experience once before, it was a difficult six days in the hospital. Having to leave Sam alone was the worst.

Initially, his parents were only able to be in his room for a total of 40 minutes. That increased a bit each day as Sam's radioactive levels went down. When one was allowed in his room, they had to wear a disposable gown, gloves and booties and stand behind a lead wall for their own protection. The primary mode of communication between the parents and their child was through a monitor and walkie-talkies.

Sam couldn't bring any of his favorite toys or his blanket with him because they would become contaminated and have to be thrown away. Erin said it was impossible not to give into a request by Sam for a hug. Even though she wasn't supposed to come in contact with her son, she had to hold him, just for a moment, when he asked her.

"He asked for a hug before I left. I'm not going to not do that when he needed that kind of reassurance," she said.

As a family, which also includes Ella, 9, and Jacob, 3, that had been through the treatment before, the Nahornys became a source of information for the Chicago hospital giving the therapy to its first MIBG patient. They were able to suggest ways to make it easier on the families, such as improved means of communication and having a room at the hospital for them to stay. In Boston, they had to travel to and from a hotel and were only able to talk to Sam through a door.

The therapy is difficult, but Sam's cancer is progressive and there is no cure.

"There are no real good treatment options for him, but yet he is this vibrant, funny, silly, normal 6-year-old boy. That is what is infuriating and frustrating to us, that there is the lack of options," Erin said.

With all of his time spent at hospitals, Sam has missed several weeks of school. He returned to his St. Isidore Elementary School kindergarten class last week.

Neuroblastoma is typically a painful disease, but Sam has no chronic or debilitating pain. He is able to run around on the playground with just as much energy as his classmates. Knowing that her son isn't experiencing aches associated with the disease makes the decision to continue with treatments easier for Erin.

The family hopes more awareness about the lack of treatment for children with cancer will increase through Sammy's Superheroes, so other families can be helped.

Erin said she was shocked to learn how little funding there is for childhood cancer.

"There are great organizations that raise funds for childhood cancer, but almost all of them are families going through it and private foundations. The federal funding is very, very little," she said.

Other cancer-awareness groups that raise funds typically give only a small percentage to support research for childhood cancers.

"There is no good answer for it," Erin said.

She and others involved with Sammy's Superheroes have been in contact with senators to push for more dollars for research. Until better treatments are discovered, children with cancer will continue to be treated with therapies designed for adults.

"To me, it is taking an extra-large men's suit and saying we'll cut it down and make it fit this little kid. Well, it was never meant to fit a little kid. You can cut it, you can sew it, but it will never fit this little kid," said Julie McClure, one of the 11 members on the Sammy's Superheroes board.

The foundation has big goals. Hopes are for gold — the color representing Sammy's Superheroes — to be as recognizable for childhood cancer as pink is for breast cancer.

The group will put on a "Glow Gold" 5K fundraiser Sept. 6 in Pawnee Park. Families affected by childhood cancer are invited to attend.

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Information from: Columbus Telegram, http://www.columbustelegram.com

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