Tuesday, February 19, 2008

Interesting Story about a 10 Year Old with Crohn's and Remicade


He’s destined for a trip to Disney World and a visit to the White House for a possible meeting with President Bush.

But 10-year-old Jacob Kaufman admits that if there’s one thing that leaves him excited these days, it’s not the trips or any honors but the fact that he may have turned a corner in battling a rare form of Crohn’s disease that made him miss school for nearly six months.

He’s not out of the woods yet. But after undergoing so many tests, procedures and surgeries, Jacob, a fifth grader at James L. McGuire School, is at the point where some doctors at Hasbro Children’s Hospital believe his disease is in remission and that he may be ready for another try for a reverse colostomy that would allow him to live a normal life once again.

In part because he has shown so much tenacity, and even courage, the hospital has named Jacob its first-ever representative to the Children’s Miracle Network Champions Across America program, which honors children who have triumphed despite severe medical adversity.

The network is both a fundraising tool for the nation’s children’s hospitals and a way of providing inspiration to children and their families.

Jacob shares his time between two households: with his father, O. Brian Kaufman, who lives on Smithfield Road with his companion, Michelle Niestrepski; and his mother, Joanne Kaufman, who lives in Pawtucket with her companion, Edward LaRose.

As Jacob and his family tell it, his story began 13 months ago when he woke with a fever that wouldn’t go away, accompanied by severe pain and constipation such that he could hardly walk. Only after a CAT scan did doctors discover that he suffered from a rare form of Crohn’s disease, in which a high white cell count was fooling his body to attack tissues in the intestine, ultimately leading to an abscess that was strangling his rectum.

He was in and out of the hospital 81 days as doctors employed different strategies to reduce the infection. But he was an unusual patient in another way: the 10-year-old read everything he could about Crohn’s disease, became informed on all the medicines he was taking, and made it clear he wanted to be one of the decision-makers.

“Since the beginning he’s been part of every conversation with the doctor,” recounts his father, Brian, an instructor of English at Quinebaug Valley Community College in Danielson, Conn.
Indeed, battling Jacob’s disease has been a family affair. During the week, Joanne, who works at Regine Printing in Pawtucket, and Edward, who was temporarily unemployed when the company he worked for moved to Cleveland, took turns standing watch at the hospital at nights and during weekdays; while Brian, whose health insurance was paying the bulk of the nearly $1 million that the treatments were costing, and Michelle, who was then nearing completion on her doctorate in English at the University of Rhode Island, took over the weekends.

When the family realized that one of the operations fell on the same date as the opening of the new Harry Potter movie, which Jacob wanted to see, the five resolved the dilemma by going to a special midnight show, just a few hours before Jacob was slated to report to the hospital.
The parents recall other moments, such as when Dr. Jason Shapiro of the Hasbro staff read chapters of a newly released Harry Potter book for 2½ hours while Jason was undergoing an MRI. And when Jacob complained “what did they do to me,” Dr. Richard G. Gillerman saw to it that hospital staff would no longer put a catheter on him unless Jacob approved. Jacob was also the one who decided whether he should be injected with a new drug, Remicaid, that had been effective for 70 percent of patients but carried risks. As Jacob explained yesterday: “I just decided to try it because I didn’t think it could get worse than I already was.”

Last September, just four days after being injected with the new drug in a four-hour procedure, Jacob was feeling great, so much so that he was ready to go back to school.
Since then he’s been a straight A student, and taken up the clarinet and playing with rubber swords. He’s gained 10 pounds.

The hospital originally wanted to honor Jacob with a celebration today at his school, but school officials rejected that idea saying it would have entailed too many complications. So the hospital turned to Wal-Mart, which is giving Jacob a $1,000 shopping spree at its Coventry store at 10 a.m. today.

There are other events slated for next month — a celebration with other Children’s Miracle participants at Disney World, followed by a charter flight to Washington.

1 comment:

Anonymous said...

what a lovely story, here's hoping that Jacob is still staying well.

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