Boy's Brave Battle Against Brain Cancer at 'the Best Place'

Nov. 26, 2008— -- When Daniel Biljanoski was 12 years old, he had a cancerous brain tumor the size of a goose egg removed from his head. His doctors in upstate New York weren't initially hopeful about his prospects for recovery, but Daniel and his family weren't about to give up without a fight, and neither was the staff at St. Jude Children's Hospital.

Daniel was diagnosed with atypical teratoid/rhabdoid Tumor, or AT/RT, a rare and aggressive form of cancer that occurs most commonly in children. The tumor involved a quarter of his brain.

"The chief of neurosurgery, his neurosurgeon, told us that if it is the AT/RT, we could be looking at 12 months [to live]," Daniel's mom, Lisa Biljanoski, told "Nightline." "It was terrible. It was horrible. Nobody should ever have to hear that -- about a child, nonetheless."

Daniel asked his oncologist what he would do if his child were diagnosed with AT/RT, and the doctor recommended that Daniel seek treatment at St. Jude's Children's Research Hospital. So 15 days after brain surgery, Daniel and his mother left the rest of their family in Auburn, N.Y. and traveled to Memphis, Tenn., to the largest research hospital in the world for childhood cancer.

St. Jude: Treating Cancer With Teamwork

A cancer diagnosis can be a huge financial burden for many families, but St. Jude covers the cost of treatment for every patient.

"You will never get a bill from St. Jude for anything," said Joanna Jackson, the registrar who welcomed Daniel and Lisa and checked them in. "If the insurance company says we'll only pay 20 percent, St. Jude will cover the balance. What can I say? It's a wonderful place to be."

And strangely perhaps, it is also a happy place: a hospital that encourages sick kids to still be kids. Toddlers ride tricycles in the hallways, there are parties for the patients and uncomfortable needle pricks are rewarded with a trip to the toy chest.

On his first day at St. Jude, Daniel displayed his usual positive attitude. "I honestly feel awesome," he said.

The hospital's researchers are still investigating and perfecting treatment for AT/RT, and Daniel was soon introduced to his team of professionals. There seemed to be an awful lot of people involved in the care of one little boy: a physical therapist, an occupational therapist, a social worker, a teacher and numerous nurses and doctors. The same size team works with each and every patient at St. Jude.

"I think it's different because the whole infrastructure is different," said Tabatha Doyle, a registered nurse who is the coordinator of the brain tumor program. "It's a teamwork perspective. Everybody works together to make sure the patient is completely taken care of -- there's not anybody who feels like they are a more important member of the team than anyone else, even the physicians."

Daniel's primary physician, Dr. Amar Gajjar, described his role.

"The best way I can describe it is that I'm the conductor of the orchestra, so I make sure everything we've got designed for Daniel and his care is coordinated and everything is going as we expect it to go."

For more than a decade, Gajjar has been pioneering an experimental protocol for children over 3 with AT/RT, a protocol that could have the potential to save Daniel's life.

"Most patients have some side effects, some headaches, some nausea and vomiting," said clinic nurse Dori Parker. "[Daniel] comes in the clinic every time with a smile on his face and fives me a hug and tells me how happy he is to be in the clinic. And to see us. I mean, you can't get better than that."

Hope for 'Hopeless Children With Hopeless Diseases'

St. Jude is a research hospital, and to be accepted there a child must have a cancer under study, as Daniel did.

Actress Marlo Thomas spearheads the hospital's fundraising, which produces a whopping $600 million annually, making it one of the largest charities in the United States. Her dedication to the hospital is lifelong -- it was founded 46 years ago by her father.

"We are studying what we don't know, because we are a research center," Thomas said. "We are moving our science from the laboratory to the bedside to the patient very quickly."

Thomas says her father's commitment began long before he achieved fame and fortune as the star of TV's "Make Room for Daddy."

"He literally had $10 in his pocket and it was going to cost $50 to get me and my mother out of the hospital," she recalled. "And so the sermon that day at church was on St. Jude, patron of hopeless cases. ... So he took out those little envelopes that they used to put in the baskets and he wrote on it 'Dear St. Jude, no one's more hopeless than I am. ... Just give me a sign that I'm going in the right direction.'

"The next day he got a call to play a singing toothbrush on the radio and the pay was $75. So all through his life he kept having these signs and so he kept saying to St. Jude, someday I will build a shrine to you and for you, and so that's when he decided that he would build a shrine that would be a living place of children, hopeless children with hopeless diseases."

Hopeless children like Daniel.

Dr. Thomas Merchant, the chief of the radiation oncology department, said that Daniel "had great surgery, he's getting excellent radiation, he's going to have very strong chemotherapy."

Still, Merchant acknowledged that the survival rates for this type of cancer are "very low."

"I just can't even bring myself to say -- survival is not very common," he said.

Daniel underwent a series of MRIs to determine if the surgeons in upstate New York were able to remove the entire tumor in his brain and to see if cancer cells were still spreading.

The next day, Daniel and Lisa met radiation oncologist Dr. Larry Kun, who informed them that there was no sign of spreading to the spine, "which is good for you and good for everyone."

"I actually stayed up late one night researching. They say once it gets to the spine you have to take action immediately," said Daniel. "The spine just connects to all the organs."

"That's true," said Kun. "And your spine looks perfectly good."

Surviving Treatment With 'Strength, Hope, Faith'

Despite the good news, Daniel still had a difficult journey ahead as he began a rigorous and painful course of treatment in an effort to save his life.

"He's on a protocol that is very intense, probably one of the most intense in the nation for this type of tumor, so we have to hope that there are children who are going to survive this," said Merchant.

Daniel's radiation dose needs to be big enough to stop the cancer from returning, while doing as little damage as possible to his brain. It is a dose too strong to give to children under age 3 without causing significant brain damage.

When asked to rate the difficulty of the treatment on the scale of one to10, with 10 being horrible and one being OK, Daniel said he'd put it as a one. He is relentlessly optimistic, saying he feels mentally and physically strong and doesn't ask "Why me?"

"Hey, you can't change it, so why bother?" he said. " [I] would rather me than other kids who probably couldn't take it, and I was the person who before all of this was afraid of needles and stuff like that, so I pretty much right now am not afraid of needles as much as I was before."

"Daniel and I talked the first night the neurosurgeon told him that it was cancer, and we were curled up together in the hospital bed, and I said to him, 'You know what Daniel? I'm going to turn off all my emotions right now except for strength and hope and faith,'" said Lisa. "We have to get through this and I said to him, 'I'm not going to cry about it because I can't. I have to stay strong.' And he squeezed my hand, and ever since then we've just thought this is something we have to do."

Chemotherapy for Children: 'I Was Horrified'

By the end of January 2008, Daniel had received 31 radiation treatments. Doctors were delighted with his progress, and he was finally allowed to go home to Auburn, N.Y., for the month of February. To the family's surprise, the entire town was abuzz with ways to reach out to Daniel -- there were fundraisers planned and thoughtful gifts, like a handmade quilt.

"Everyone sewed a little patch for who was praying for me," Daniel said. "It'll keep me warm; it's just amazing what everyone in the community does for us and our family."

And best of all, during the short respite from the hospital, Daniel got to get outside for some old-fashioned fun with his friends -- sledding.

"I love the snow. It's like I was born into it," he said. "I didn't want to hit my incision, so mom made me wear a helmet that's bigger to fit around my head."

The month was both precious for Daniel, and a painful reminder of all he was missing.

"I'm feeling a little anxious about going to St. Jude," he said, before returning for chemotherapy. "One, I just don't want to leave the house and my family."

"The chemotherapy has been described to him as poisons that are going to be put into his body and they're going to kill the good cells as well as the bad cells," said Lisa. "And so that's something that's scary for him, thinking that a poison is going to be put in his system."

The chemotherapy turned out to be even worse than they feared. Many days, Daniel was violently ill.

"I was horrified," Lisa said. "I wasn't strong. I was calling my mom, my husband, my best friend just in complete disbelief of how sick the kids actually become. I know it's necessary in order for him to get better. So it's just, put the mom hat on and OK, this has to be done, there isn't a choice. ... Let's just plow forward and get it over with."

In June, after three months of chemo, Daniel's treatment came to an end. It had been seven months since his cancer was diagnosed, and Daniel was feeling weak but proud.

"I did it!" he exclaimed. "I feel so lightheaded right now, I'd trip over my own legs. I'm drugged!"

St. Jude: 'The Best Place'

A month later, after regaining some of his strength, Daniel headed home. Waiting for him at the airport was his grandmother and a group of family friends.

"Today is very special. ... We can't believe this day has come," said his grandmother Beverly Centers.

"Words cannot explain how I feel," Daniel said when he got off the plane. "I am so happy and excited."

The journey through this year, through cancer, had been a long one, but four months after his homecoming Daniel was back at school. Although the cancer treatment slowed his ability to process information a little bit, Daniel remains a straight-A student, and every day he is getting stronger.

"It's fun running around again. I've gotten my strength back!" he said. "I don't have the stamina I used to, but I am trying to get my stamina back."

Best of all, almost a year to the day since his ordeal started, on Nov. 4, Daniel turned 13 years old -- that alone was a cause for celebration.

"He wasn't even expected to be here for his 13th birthday, and he's already had his 13th birthday and having his party tonight," said Lisa. "And we're going to have many, many years to come."

That he has turned 13 and is healthy and has not lost his humor or sweetness from all that has happened is a tribute not only to him but to those who cared for him: his family, of course, but also that team at St. Jude that never lost sight of the boy by only seeing the disease.

"I'm not saying that it was lucky, but I was at the best place to be treated and I know that," Daniel said. "I went to the best place and my future will be very good because of that."

Doctors say they will be carefully monitoring Daniel for the next year and a half to make certain the tumor does not return. He will have periodic check ups at St. Jude until age 21.