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Afflicted boy's family weathers adversity
By OLIVIA L. LAWRENCE, The Bristol Press
05/01/2002
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PLYMOUTH -- The Lowell family is together and Jessie, a 3-year-old afflicted with serious health problems, continues to hold his own, says dad Kenneth Lowell, describing what's important to him from day to day.

Friends agree, but they also want to offer tangible support to the family, which has kept its spirit during some very dark months.

"The dad was reluctant. He said, 'we can make it,'" said Lou Rasco, principal of Prospect Street School of Lowell's initial response to plans for a fund-raiser.

"The important thing is Jessie is doing well. He's beaten the odds," Lowell said, explaining that his son has been undergoing a new chemotherapy protocol for a rare neuroblastoma.

Jessie is one of only 20 children nationwide to have received this newly developed treatment and he is the first child -- "a test case" -- at Connecticut Children's Medical Center in Hartford.

Rasco and Town Councilor Ted Kosikowski, good friends and associates of the Lowells, think the family should have help as it continues to deal with major medical and financial problems. Along with others, they have put together a plan for a pasta dinner to help raise money.

Jessie, born with serious esophageal malformations and later diagnosed with mild autism, seemed like he was making good progress last October.

Then the little boy, who communicates nonverbally, broke his leg and needed a CAT scan. Something unexpected and much more sinister also showed up on the images.

The unexplained shadow in Jessie's abdominal area led to a 7 1/2-hour biopsy. The family learned Jessie had a rare type of cancer and "an excruciatingly grim prognosis," Lowell said.

Later that week, Lowell was laid off from his job as a mechanical engineer.

The family also includes Lowell's wife, Denise, and their older children, Brittany, 11; Ricky, 8; and Kevin, 5.

"It was overwhelming. Unless it happened to you, you'd never understand in a million years. It was completely engulfing. We cried for three days. And then we had to get on with it and keep it together. We'd got through a lot and we'd get through this too," Lowell said.

The Lowells knew before Jessie was born that the child's esophagus had not grown properly. Denise Lowell experienced serious problems during the pregnancy and underwent many tests herself.

Born two months prematurely, Jessie needed to be revived even before the Cesarean section took place, and he was subsequently placed in neonatal intensive care at the University of Connecticut Health Center.

"We just tried to keep going. He was so little," Lowell said, recalling how he and his wife traded off "regular" work shifts and hospital shifts for months. The couple finally persuaded hospital officials to let them take Jessie home before the surgery for his esophagus and they received "life-saving training" for the care he would need.

Later, the couple noticed developmental delays and other clues that Jessie was not "further along" and it was not just because of his medical circumstances, Lowell said. Because they were experienced parents, it was obvious the child had some other condition causing the limitations and Lowell said a diagnosis of autism made sense.

"Too many parents waste time by going into denial" rather than seeking help for their child, Lowell said.

"He's a great kid with special needs," Lowell said, describing how Jessie will take his mom or dad by the hand and show them what he needs.

With autism, "he's in his own world. You have to interject yourself," Lowell said.

"We try and keep our priorities in order. You can't take three steps [into the Connecticut Children's Medical Center] without seeing others worse off and you stop feeling sorry for yourself," Lowell said.

"We never said 'poor us.' You take the cards you're dealt."

Lowell said Jessie's chances of survival have increased from about 50 percent going into treatment to the current outlook of "high 90s."

If tests keep showing Jessie cancer-free for two or more years, doctors will consider the child has beaten the disease, Lowell said.

Lowell talked about how the family has weathered the past eight months on top of Jessie's prior health problems.

In many ways, "it's been such a reflective type of thing," Lowell said.

"We try to keep as much normalcy as possible" and the other children appear resilient, Lowell said, acknowledging, "It's not been a fun trip."

Throughout most of its history, the family has always tried to be generous to others in need, Lowell said, recalling toy donations and helping out with Lions Club activities.

"We've been the ones to give," he said.

Now, "I'm out of work. I'm doing the best I can," Lowell said, discussing how it took a while to come to terms with the upcoming fund-raiser, but "I'd appreciate it."

While the family has had the benefit of the state's HUSKY medical insurance plan for uninsured children, other regular expenses have been hard to handle since Lowell became unemployed, Rasco said.

"The school system has been phenomenal" and the Lowells have found Connecticut "a great place" to be in terms of services for their family.

Before his recent illness, Jessie was enrolled in a program for children with autism at Plymouth Center School. His parents hope he can get back to class; recently four teachers from that program came to their home to talk about Jessie's return.

"They feel very strongly he'll do well," Lowell said. One goal will be to increase Jessie's communication skills and build a vocabulary of about a dozen words, Lowell said.

Rasco said many teachers are also among those donating their time to the pasta dinner.

"Everyone has been fantastic. The support we have gotten -- even from total strangers -- it's been a wonderful experience and we've found that people genuinely care," Lowell said.

Tickets to the pasta dinner are on sale at Main Street and Prospect Street schools. The event is scheduled for May 15 from 5 to 8 p.m. at the Terryville Fire Department facility on Harwinton Avenue.

Donations may made to Jessie Lowell, c/o Webster Bank, 1 N. Riverside Drive, Terryville, CT 06786.


©The Bristol Press 2010

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