Family, boy still await a miracle

The family has exhausted standard treatment options for the 14-year-old boy.
BOARDMAN -- Every day, Wendy Aron prays for a miracle that will save her son's life.
Two years ago, 14-year-old Jordan Aron was diagnosed with a rare type of cancer called rhabdomyosarcoma.
Although virtually unheard of among adults, it's a common cancer among children that attacks tendons, muscles and bone tissue, often with fast-growing tumors.
"Jordan was diagnosed after we took him to get braces and he couldn't open his mouth all of the way," Aron said. "They did an X-ray and saw a tumor in his sinuses." Soon, Jordan underwent surgery and radiation therapy at Cleveland University Hospital, and doctors were confident of a full recovery.
"They didn't think he'd have a recurrence," she said.
Then the cancer roared back, and during the summer of 2004, he had major surgery to remove a tumor at the base of his skull. During the difficult surgery, doctors removed Jordan's jawbone and replaced it with a bone from his leg.
And now, once again, the cancer is back. Doctors again have suggested removing the replacement jawbone .
"We don't want him to have to go through this again," Aron said. "This is a deforming surgery. They'll have to use a bone from his other leg this time, and he could be without a bone in his jaw for a year."
Jordan is a son of George and Wendy Aron and is a pupil at Glenwood Middle School in Boardman. He has an 11-year-old sister, Lindsay.
Dr. Timothy P. Cripe, a pediatric hematologist and oncologist at Cincinnati Children's Hospital, believes there's another option for Jordan.
Dr. Cripe has been researching rhabdomyosarcoma for 10 years and has developed an alternative gene therapy that has proven successful in laboratory animals.
"The basis of gene therapy is to take the nucleic acid of DNA and RNA and use it to alter diseased cells. To treat rhabdomyosarcoma in laboratory mice, we take a mutated version of the herpes simplex virus and inject it into the body to kill mutated cells. We've had much success with this therapy among lab animals. In some cases 10 out of 10 tumors have disappeared," he said.
Dr. Cripe is ready to try this revolutionary gene therapy on humans, but before he can, he needs $1.8 million from a sponsor because drug companies and the federal government have denied funding.
"They don't feel the disease is common enough to fund it," said Aron, who has become passionate about cancer research and funding. ". . . I think it's almost criminal that they won't fund it since cancer is the number one killer in this country. Doctors shouldn't have to solicit money. If it touched their lives personally, they'd wake up and realize what's important."
Although rhabdomyosarcoma is rare, Dr. Cripe said there are about 250 cases per year in the United States, and it's the most common type of cancer among children.
"Drug companies and the federal government don't feel it's a big enough market, and they are wary of using the therapy in children before it can be tested in adults," he said.
A last hope
At this point, though, Dr. Cripe said the gene therapy is the last hope for Jordan.
"Although there's no 100-percent guarantee that the gene therapy would work, Jordan has gone through all of the standard therapies, and for now he has been declared incurable. Still we are holding out hope," Dr. Cripe said.
Meanwhile, the clock is ticking.
Even if Dr. Cripe received funding to go ahead with the gene therapy, it would take six months to a year to get all of the necessary elements in place to perform the therapy.
"I really applaud [Wendy] for trying to find the best therapy for her child," Dr. Cripe said. "I just took Jordan on as a patient in October, and before that, this family was all over -- Tod's Children's Hospital, Rainbow Babies and Children's Hospital, Cleveland Clinic and even St. Jude's in Memphis."
Jordan makes about three trips each month to Dr. Cripe's Cincinnati office for intravenous treatments of various medications. In addition to Dr. Cripe, Jordan is also a patient of Dr. Scott Beichner of Boardman.
Growing weary
Aron said Jordan is strong, but he is growing weary.
"He doesn't think about it or talk about it. He lives in the moment and thinks he's going to be fine. He hums a tune every day and rides his scooter, but he's getting weary. The tumor is getting larger, and it appears on the side of his face. It's really been getting to him in the last month," she said.
She is also getting weary.
"Before this, I was just a regular mother. I never gave something like cancer a second thought. There's longevity in my family. My grandparents lived to almost 100. I never thought this would happen to our family," she said.
She finds strength through prayer, family and friends.
She is a member of the El Emeth Temple at 3970 Logan Way in Liberty, where a spaghetti dinner is planned for Jordan from 4 to 7:30 p.m. Feb. 20.
XDonations for Jordan can also be mailed to: Cancer Free Kids, Jordan Aron, P.O. Box 575, Loveland, OH 45140.

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