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'I HAVE A LIFE TO LIVE'
Roanoke Times & World News
08 April 2005
Fifteen-year-old Jordan Fifer of Roanoke has Crohn's disease, an incurable inflammatory bowel condition.
And after five years of living with its unpleasant side effects, he will find out this spring or summer if he has a chance of feeling better.
For the next several months, the 15-year-old will be hospitalized at Duke University Medical Center in Durham, N.C., or living with his mom in a nearby apartment and making frequent trips to the hospital. After he returns to Roanoke, possibly in time to begin his junior year of high school, Jordan could experience a dramatic reduction in symptoms, he and his family believe.
That, in turn, would reduce his need for drugs or additional hospitalizations and surgery.
It's a result that would enrapture Jordan, his family and others who are struggling with the ailment.
About a million Americans have Crohn's or a similar condition, ulcerative colitis, according to the Crohn's and Colitis Foundation of America. Dr. Michael Hart, a Roanoke physician, estimated in 2003 that about 100 children in the Roanoke region had the same ailment as Jordan. Hart could not be reached for an updated figure.
For those interested in his story, Jordan is keeping an online diary. It is his account of this latest leg of a medical journey that began when he was diagnosed at age 10. He intends to keep it up as best he can as Duke's physicians flood his body with high-dose chemotherapy in coming weeks and then perform a stem-cell transplant.
Stem cells are a so-called repair kit for the body, replacing damaged or worn cells and helping fight diseases. Stem-cell transplants are used to treat various diseases, though doctors are still studying their role in fighting Crohn's. Jordan's transplant is classified as a research procedure. Several Crohn's patients, children and adults alike, have benefited from the procedure, but the Crohn's foundation said it's unsure if the potential benefits outweigh the risks.
"That statement is true for the majority of patients. They haven't reviewed Jordan's case," said Gary Fifer, Jordan's dad, in reply to the foundation's position. "His looks to be an unusually severe case."
As with any stem-cell transplant, the procedure carries a small risk of death and a risk of other complications. Jordan's immune system may not regenerate, placing his body at serious risk of infection. But with an active case of Crohn's, Jordan believes he faces a strong chance of having a lifetime illness. He could lose his colon.
If this sounds like something you've read before, here's why: Two summers ago, Jordan moved into an apartment near a big Chicago hospital to prepare for an experimental stem-cell transplant. But it never happened. After about 2 1 / 2 months of waiting in Chicago, Jordan learned that doctors were canceling his procedure because for a brief moment, his disease entered a quiet phase. He no longer met the parameters of the doctors' study.
Jordan and his mom, Hope Trachtenberg-Fifer, returned to Roanoke.
That was 18 months ago. Jordan resumed taking steroids, doctors' best defense against the disease. Jordan said steroids work, even though they mask rather than fix the underlying problem.
"I feel well," he said recently.
But because steroids can cause many side effects, including pudginess (most evident in Jordan's cheeks), headaches, osteoporosis, bone and organ damage, and high eye pressure - some of which Jordan has and some of which he could get later - the drugs aren't considered a long-term solution.
"I can't live with them. I can't live without them," Jordan said of the steroids.
The search for options led to the idea of a stem-cell transplant.
According to the common wisdom surrounding Crohn's, the disease results when the immune system mistakes food and normal body tissue for foreign objects and attacks the gastrointestinal system. When the disease is active, it causes stomach aches, diarrhea, internal and rectal bleeding, weight loss, fatigue and fever.
Here's how the transplant is to occur: Medication will draw blood stem cells from Jordan's bone marrow into his bloodstream for collection. (He'll be his own stem-cell donor.) High-dose chemotherapy will destroy or delete his abnormal immune system. Next, doctors will put the stem cells back into Jordan. If everything happens as expected, the cells will create a new immune system without the malfunction that afflicts Jordan today.
Unlike the Chicago hospital, which stepped back when Jordan improved, Duke sees Jordan's relative health as an asset.
"Duke says this is great he's in this condition," Trachtenberg- Fifer said.
Jordan has medical insurance, and the company has agreed to share costs of the procedure, which Jordan's doctor estimated at $200,000. Gary Fifer expects the family will owe $25,000 to $30,000 for medical and other associated costs, such as his wife and son's long stay in a Durham apartment. The family has resumed an earlier fund- raising effort detailed at Jordan's Web site.
Recently, Jordan took a leave from his job as a cashier at Kroger and from Patrick Henry High School, where he is the sophomore class president. He also attends the Roanoke Valley Governor's School for Science and Technology.
He and his mother packed their bags for another long stay near a big hospital and headed to Durham. Jordan is to be enrolled in a Durham program to keep up his studies, though he could lose ground academically.
"I'm focused on the stem-cell transplant," Jordan said.
If it takes a couple of months to have a procedure that could dramatically improve his quality of life, it's a reasonable trade- off, he said.
"I have a life to live."
On the Net:
www.jordanfifer.net
The experimental treatment: Stem-cell transplant
Stem cells are a so-called repair kit for the body, replacing damaged or worn cells and helping fight diseases. Stem-cell transplants are used to treat various diseases, though doctors are still studying their role in fighting Crohn's. f+z f-z Jordan's transplant is classified as a research procedure. Several Crohn's patients, children and adults alike, have benefited from the procedure, but the Crohn's foundation said it's unsure if the potential benefits outweigh the risks.
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