Monday, February 10, 2003

Risky experiment ahead for teenager with Crohn's disease


Tristate donations help family pay for stem-cell program

By Tim Bonfield
The Cincinnati Enquirer

A generous Tristate community raised the money. Today in Chicago, the first big step begins in an experimental treatment for a boy with a severe case of Crohn's disease.

Fifteen-year-old Eric Page of Whitewater Township is scheduled to become one of a handful of people nationwide with the chronic digestive disease to receive a stem cell transplant at Northwestern Memorial Hospital in downtown Chicago.

"So far, so good," Eric says. "But it's a lot more than I expected."

In 1999, Eric was suffering a severe case of Crohn's disease but was faring well enough to continue his bone-jarring hobby of motocross racing. Since then, his condition has worsened, prompting the family to seek a risky, yet potentially promising treatment.

Crohn's, a chronic disease that affects about 100,000 children and 600,000 adults nationwide, causes the body to attack its own digestive tract. Most can control their symptoms with a combination of medications and special diets. Some have surgery to remove portions of their intestines.

Eric tried all the standard treatments without success. After learning about the stem-cell transplant program in Chicago, the Page family sought to enroll Eric, but their health insurer refused to pay.

The doctors and the hospital agreed to provide the care at a discounted rate of $75,000, not counting travel, lodging and various other expenses that raised the estimated need to about $100,000.

The Page family raised the money through several events and dozens of donations some from as far as Alabama.

The family also got two $40,000 gifts: a stock gift from a family friend and a donation from Shire Pharmaceuticals in Florence.

"We are so overwhelmed at the attention that Eric is getting. We never dreamed the public, people who don't know us personally are being so generous," says Eric's mother, Cheryl.

A series of tests

Eric has been in Chicago since Jan. 22 for a series of pre-treatment tests. He already has received a small dose of chemotherapy designed to spur stem-cell production, plus growth factor hormone injections that also accelerates stem-cell production.

Today, Eric begins the stem cell harvesting process. It starts with a central line placed in his neck to access the jugular vein. Then, for three days doctors will draw blood that will be sifted for stem cells.

Each blood draw process lasts two to four hours. The collected cells will undergo further processing to isolate stem cells from unwanted or disease-causing cells. The purified stem cells will be stored until Eric completes the next, tougher step.

On Feb. 26, Eric is scheduled to receive four days of chemotherapy to destroy his malfunctioning immune system. On the fifth day, he will receive his stem cells.

Then, much like children who get bone-marrow transplants for leukemia, Eric will spend about 10 days in an isolation room until blood tests indicate his immune system is functioning. During this time, Eric's immune system will be so weak that even common infections could prove fatal.

Eric would become the eighth, and the youngest, Crohn's disease sufferer in the country to receive the transplant. The first was performed in spring 2001.

Once 10 cases are complete, researchers plan to seek federal money for a larger clinical trial, says Dr. Robert Craig, co-investigator in the study.

"We're hoping for a complete remission. But nobody knows how long the treatment will last. That's why we're following the patients so closely," Craig says.

None of the other patients has suffered major complications from the stem-cell treatment and all have been able to discontinue other treatment for the disease. It likely will take several more years, if ever, before stem-cell transplants become more widely available. If proven successful, the treatment still would be reserved for the most severe cases. But even with such a restriction, as many as 25,000 people with Crohn's nationwide are sick enough to qualify, Craig says.

Homesickness

Eric has been able to stay in touch with friends via phone calls and e-mails. But for a family that enjoys a mostly rural lifestyle, spending so much time in a big city has been a shock.

"We feel safe. But it's just so loud and noisy," Cheryl Page says. "We mostly stay in the apartment and watch a lot of movies."

Eric expects to be in Chicago, in and out of the hospital, until sometime in March. He's already looking forward to that day.

"The thing that is getting me through this procedure right now so well is just thinking of getting back to racing and being the best again at every track I go to," Eric says. "And also thinking of my friends and family and spending time with them. Thank you for all the love and prayers. It really means a lot to me."

The Page family has established a Web site to allow interested people to follow his experience in more detail: www.caringbridge.org/oh/eric.

E-mail tbonfield@enquirer.com




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