Joey Gotowski

 

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Almost three years ago, then 10-year-old Joseph Gotowski got a second chance at life.

Today, he's fighting for a third, this time against lymphoma.

Joseph, who goes by Joey, was born with Hirschsprung's Disease, which kept his colon from removing digestive waste. He underwent his first surgery 72 hours after birth and has undergone 24 operations since then. Until he received an intestinal transplant in September 2005, he got most of his nutrition intravenously, which strained his liver until it began to fail.

For more than two years following the transplant, the Gotowskis returned to a typical life. Joey finished elementary school and moved on to Elizabethtown Area Middle School, and his parents worked on paying off medical bills.

Then Joey's mother, Cindy Gotowski, noticed a lump in his neck when he went for a haircut this July.

Two days later, he underwent a CAT scan at Hershey Medical Center, and on July 22 he was back at the Children's Hospital of Pittsburgh, where he had his transplant, to have his swollen lymph nodes removed.

A biopsy confirmed the Gotowskis' fears. Joey had stage one post-transplant lymphoma disease, a type of non-Hodgkins lymphoma. According to the American Cancer Society, patients in the early stages of the disease have a 91 percent chance of living at least five years after diagnosis, and a 71 percent chance of living at least 10 years.

Dr. Vikas R. Dharnidharka is chief of the Division of Pediatric Nephrology, the branch of medicine related to children's kidneys, at the University of Florida Health Science Center. He has written that intestine transplants are relatively high risk, with as many as 20 percent of patients developing lymphoma.

Joey started chemotherapy July 28 in Pittsburgh so his transplant doctors could work with the oncologists. For now, Joey has three week-long chemotherapy sessions scheduled, with 10-day breaks for blood work at Hershey Medical Center. What comes next will depend on how the cancer responds.

Though Joey is once again ill, his father, Matt Gotowski, said the family would endure as it did before.

"We thank everybody who prayed for us for the transplant, and we would do the transplant over again. Without the transplant, Joey would have died years ago," he said. "The last thing we want to have is for people to use this as an excuse not to donate their organs. My family looks at the transplant as a gift from God."

The family is still getting support from the community. Neighbors have chipped in money for gas cards, and one even mowed the family's lawn after Matt went to Pittsburgh to care for Joey.

Given the uncertainty of how much treatment Joey will need, estimating costs is difficult. The transplant alone cost $590,000, most of which was covered by insurance.

In addition to whatever costs insurance doesn't cover, the Gotowskis will have to pay for lodging and food while in Pittsburgh. Staying in a group residence like the Ronald McDonald House isn't an option, Matt said. Joey's immunity is lowered by the chemotherapy, and being close to others in the shared kitchens and common areas might increase his risk of infection.

Matt slept in his son's room to help him through the nausea associated with chemotherapy before returning to work last week. Joey's mother is now staying with him and they will put up at a hotel between treatments.

According to Dharnidharka, there is no consensus on the best way to treat post-transplant lymphoma.

Matt said his family is asking the community for prayers.

"I don't think medical science has a cure for this or knows everything," he said.

For now, Matt said he's trying to keep a hopeful attitude.

"You can't take this negatively," he said. "It's been one thing after another. He's tired of fighting this stuff. You have to keep a very up-beat attitude."

Joey is also trying to stay positive, he said.

"He has his up days and bad days, more up days than bad," Matt said. "I think he's one of the toughest kids I've ever seen."

Still, he wonders of his son's illnesses, "How much can you bear?"

To donate to the Joseph Gotowski Transplant Fund, send checks to Sovereign Bank, 820 S. Market St., Elizabethtown, PA 17022.