Hope grows for Montville boy with Leukemia

07/26/04- Posted from the Daily Record newsroom

Debbie Donofrio-Schicke of Montville tries to keep up with her son, Tyler, during a walk in Boonton. Tyler, who has been battling a rare form of leukemia, is in remission. Danielle Austen / Daily Record

BOONTON--There's a noticeable hop-skip in Tyler Schicke's step nowadays.

His mother, Debbie Donofrio-Schicke, doesn't know where it came from. Tyler himself can't say where he learned it, but it developed soon after he returned from Arizona, where he had his blood cleaned of the chemotherapy he received for several months this year.

Many things have changed for the 8-year old Boonton native, as well as for those who have come to his aid since he was diagnosed late last year with a rare form of leukemia, which includes two types of the cancer. Foremost is that now the disease is in remission.

Some of the other changes are more apparent just by looking at him. In late January, Tyler's dark, straight hair was thinning from chemotherapy. His build was slight and his complexion was pale, even though he maintained some of his vigor.

Now Tyler's hair has grown back into thick, wavy locks of light brown with blond highlights. After a trip to the beach two weeks ago, his now more-robust frame has a tan. While his mother said she can barely keep up with her son, she's not complaining.

"I just got pictures back from Easter and it brought tears to my eyes," she said, recalling the improvement in Tyler's health since then.

"It's like all of a sudden it was eight months of total hell and then, bang, back to normal again," Donofrio-Schicke said.

Tyler has a form of Burkitt's acute lymphoblastic leukemia, which his mother said bore symptoms of both A-cell and pre-B-cell leukemia.

After several months of treatment and some debate by doctors from Morristown Memorial Hospital, Columbia Medical Center, the Children's Hospital in Philadelphia and the Cancer Institute in New Brunswick, the disease was officially declared in remission in April, and Donofrio-Schicke had her son taken off chemotherapy.

Tyler traveled to Scottsdale, Ariz., to the Envita Medical Center, where his blood was cleaned of the toxins left from chemotherapy using ultraviolet light.

"It is one of our staple treatments," said John Cannizzo, patient care coordinator for Envita. "It works well in a number of areas."

The ultraviolet procedure, which has been used since the 1940s, treats ailments from the flu to HIV to heart disease. Cannizzo said each session takes about 45 minutes, and patients usually undergo multiple sessions.

A blood test taken two weeks ago showed that Tyler's blood cells, once 66 percent cancerous, were clean.

Community donations

A groundswell of community support followed Tyler's progress. Donofrio-Schicke estimated that in all, $100,000 were raised for Tyler's medical expenses through everything from donation buckets at local stores to a pig roast in February that raised $50,000.

The support hasn't been limited to just dollars and cents. Jason Didner, a Saddle Brook-based musician, played a benefit for Tyler about a month ago. It raised a modest $90, but Didner's real contribution was a song, "Hey Tyler (Swing for the Fences)."

"Knowing how much he likes sports, I wrote baseball analogies about conquering the disease," Didner said of the song. It includes such verses as 'This cold white room ain't no place a kid oughtta be,' and 'Keep your eye on the ball, hang in there if it curves, make the pitcher see you've got cold and steely nerves.'

In March, the sincerity of that community support was tested when thieves stole a donation canister containing about $400 from Venturini's Super Deli on Main Street.

But instead of a loss, donors returned the next day to the deli and dropped more than $1,500 in the bucket. The masked thieves still are at large.

In May, Boonton police charged Robert Rudy, 22, of the Highland Lakes section of Vernon with stealing another donation canister for the Tyler Fund at a local pizzeria.

Police said the theft was "a crime of opportunity" and that Rudy did not know of the plight of the 8-year-old.

Joe Cosentino, a friend of Donofrio-Schicke and her boyfriend, Steve Gerisch, said the thefts were minor footnotes to the support.

"What I saw restored my faith in people," Cosentino said. "People came out of the woodwork to support a kid they never knew before."

Cosentino worked closely with the family to coordinate fundraisers and to see that Tyler's needs were met. He said he remembers the little boy who lost his hair as chemotherapy was injected into his spine and arm, a stark contrast to Tyler today.

"He's been an inspiration to me," Cosentino said. "We've all got problems, but whenever I want to complain I think about him."

Didner said he leapt to Tyler's aid after seeing news reports of the first theft and the subsequent outpouring of support by donors.

"I was impressed, and I just really wanted to do something to help out," Didner said. "And I thought, 'What do I have to contribute?' and it was my ability to write songs."

Summer cruise

Tyler is looking forward to enjoying his summer, which next month will include a Royal Caribbean cruise -- his one wish while in the hospital, his mother said. He will be able to climb a rock wall, swim and expend his seemingly limitless energy on other activities on the boat.

"I like climbing if there's a soft base underneath me," Tyler said. "I like to climb as high as I can."

Physical activity was something he missed while in the hospital, he said. He admits that being treated was "sort of a little bit" scary, because it was the first time that I was in the hospital that I can remember."

"He doesn't talk about it," Donofrio-Schicke said. "He never has."

She plans to take her son for a psychiatric evaluation to determine whether the ordeal has affected him. She notes that Tyler, already shy before his treatment, as become more introverted from the attention he has received.

"He's always been a shy kid, but he's really regressed a lot," Donofrio-Schicke said.

Donofrio-Schicke said the ordeal has left its emotional mark on her. She said she never gave much thought to cancer before it affected her son. Now, she says she realizes that she will forever worry about every headache and feeling of nausea that Tyler has.

"I'll never be the same," Donofrio-Schicke said. "I'll never stop worrying."

Family support

The expense of Tyler's fight with cancer also led to a consolidation of the family. Donofrio-Schicke's sister quit her job to move in with Tyler and his mother, but the house got even more full when Tyler'' father, Bob Schicke, who separated from Donofrio-Schicke, moved in to support them, even though Donofrio-Schicke was living with Gerisch.

The situation was a little awkward, Donofrio-Schicke said, but odd feelings became secondary. The entire family even celebrated.

"Amazingly, everybody got along fine," she said. "Everybody put their feelings aside and did what they had to do."

For Tyler, the move from his old home on Liberty Street in Boonton was bittersweet.

"I was happy and sad at the same time," he said. "I had been in that house since I was born."

Tyler said he was happy, though, "Because I get to see Montville," where he said the community park is the biggest he's ever seen.

Tyler has not had to take any regular medication besides an antibiotic to prevent an infection from the chemotherapy. His mother has put him on a regimen of alternative supplements, including coral calcium, to strengthen his bones, and Wholly Immune, a nutrient to boost his immune system.

Donofrio-Schicke said she has been told that if the Burkitt's portion of the disease does not return in two years, her son likely is in the clear. She says she will accept the responsibility for taking him off chemotherapy should the disease return. But for now, her son's renewed health is giving her hope.

"Seeing him like this, it gets me through every day," Donofrio-Schicke said.