When Justin Stegemann was examined by physicians at Oakland Children's Hospital, they told his parents "take him home and make him comfortable."
The 13-year-old is suffering from a neuroblastoma. Justin's tumor is rare, originating on his adrenal glands. Only 600 children are diagnosed with this form of cancer each year. Justin's tumor was discovered after he complained of back pain.
Justin and father David fly to New York City on Saturday for Justin to undergo surgery to remove the initial tumor and begin experimental treatment at Memorial Sloan-Kettering Cancer Center. Justin's Mom, Wendy, and his 11-year-old sister Alicia, will stay at home in Gardnerville and visit when they can, hopefully at Christmas.
"Justin will have surgery first, immunotherapy second, a round of chemotherapy, then one more session of immunotherapy to clear his bone marrow," David Stegemann explained.
The immunotherapy is an injection of monoclonal antibodies, which signal the patient's immune system to attack and kill the tumor.
Justin's doctor is optimistic because of his initial good health, Stegemann said. He has no symptoms of cancer, only residual effects of the chemotherapy.
Stegemann said of all treatments available to Justin, doctors at Oakland Children's Hospital and an oncology facility in Indianapolis agreed the treatment through Memorial Sloan-Kettering Cancer Center was his best option. It has encouraged the family to stay positive.
"He has one-in-three odds for full remission through this treatment," Stegemann said. "I think his odds are better because he's very strong, he's getting regular exercise and he has an excellent attitude -- he's very evenly keeled."
Justin says he's trying to lead an ordinary life while undergoing treatment and preparing for the experimental treatment. He's taking his bass guitar with him to New York.
"I'm going to maybe teach myself," Justin said as he fidgeted in a chair.
Justin's uncle Pete Stegemann has given him a laptop computer to keep in contact with his buddies and family through e-mail.
The Stegemann men will stay with David's uncle Charlie Stegemann in North Merrick, N.Y. David hopes while Justin is able he will attend a local school to continue his education, or receive home schooling while in the hospital.
"I found out from our first visit it is very expensive to ride the trains," Stegemann said. "It will cost us about $50 a day, five days a week while Justin is receiving treatment. Some of Justin's treatment is covered by a grant, the chemo is covered by Wendy's insurance, but we still have to cover the cost of co-pays and necessities. It all adds up."
Donations may be made at any Bank of America branch to the Friends of Justin Stegemann account, No. 004965744216. Family members said they are grateful for donations to help cover medical expenses.
His father said Justin's treatment could continue as long as five years, but the average for a person Justin's age is one year.
"He's gotten better, but we know it's serious. Justin has a good attitude and we know that will help," Stegemann said.
YOU CAN HELP
Donations maybe made to any Bank of America branch, account number: 004965744216
What: Friends of Justin Stegemann
Where: P.O. Box 806, Gardnerville, 89410
