11-year old battling rare cancer
An 11-year-old Oregon boy is undergoing experimental treatments this week in an effort to stop the recurring cancer he's suffered from for most of his life.
Julene Sandusky said her son Edan Cain McPeak is one of 18 people in the U.S. who are participating in a cancer treatment study at the University of Chicago Hospital, Chicago.
The treatment includes experimental cancer drugs and a stem-cell transplant.
"He started treatments Monday at noon," Sandusky said Tuesday. "The doctors decided to go ahead with the treatment even though his tumors have come back since his surgery in June. They're hoping to shrink them."
The stem cell transplant will come later, she said.
Edan was diagnosed with nodular ganglioneuroblastoma in 2005 when he was 6 years old.
His tumors have all been in his neck and jaw area.
Most youngsters with this rare cancer are diagnosed before the age of 2.
Sandusky said she first noticed a lump that came and went and then reappeared on Edan's neck when he was 4.
He also had coughing fits occasionally, a swollen lymph node, and difficulty breathing, especially during the night.
He was misdiagnosed with asthma and treated for that until a pediatrician recommended by a friend sent him to Children's Memorial Hospital, Chicago.
It turned out, Sandusky said, that a tumor was cutting off Edan's airway.
A biopsy showed that the tumor was large and malignant.
Because of the complexity of the surgery required, Children's Memorial referred Edan to the University of Chicago Hospital's Comers Children's Hospital.
Since then, Sandusky said, Edan has undergone chemotherapy, radiation, and three surgeries, the most recent in June.
Each time the tumors have returned.
Once the experimental treatment is completed, Edan will be in isolation for at least two weeks, if all goes well, Sandusky said.
"It never gets easy, but we're hopeful," she said.
She is staying at Ronald McDonald House while Edan is in the hospital.
The cancer and treatment have kept Edan from doing the things youngster his age take for granted.
"Edan has suffered permanent side effects from the chemotherapy," Sandusky said. "He has never been in school for a full school year. He just wants to be a normal kid. Here comes another school years where he feels like an outsider coming in the year late. He will return this year without hair."
She said her faith in God keeps her hopeful and upbeat despite her concern for her son and financial difficulties.
She said she almost fell part when Edan was first diagnosed.
Edan's father is dead and as a single parent, Sandusky quit her job to take care of her son.
Because of the complexity of her son's treatments and recovery, she has often been unable to work.
"Now we live in income based housing and receive food stamps to make ends meet," she said. "I love my son so very much. He has been my entire world and existence for the past 11 years."
During the long hours in the hospital, Sandusky has been taking online college course with the goal of earning a bachelor's degree in health and human services.
She currently has a job as a rehabilitation technician at Coventry Village, Sterling, but will be off work for several weeks while Edan undergoes the experimental treatments and receovers.
"I'm going to be off work for at least six weeks," she said. "I'm not sure how I'm going to make my September car payment."
Paying for gasoline and tolls going to and from the hospital also has put a strain on Sandusky's modest finances.
A fund has been set up for expenses at Midland State Bank. Donations can be made at any branch or the bank or mailed to Midland State Bank, Edan Cain McPeak, 121 N. Fourth St., Oregon IL 61061.
