In His Fight Against Cancer, Reilly O’Neill Has A Lot Of Allies

By Kaaren Valenta

When 6-year-old Reilly O’Neill was diagnosed with a rare form of aggressive cancer two months ago, the reaction by the medical community was swift.

But just as quickly, teachers, students, friends, and even strangers rallied to help the Newtown family.

“I can barely put words to how much we appreciate everything that so many people have done to help us,” Reilly’s mother, Diana O’Neill, said this week. “The response from the community has been incredible. It has been an amazing experience.”

Reilly, a first-grade student at Middle Gate School, had seemed fine until the last week in January, when he had a few symptoms, such as bloating, that his pediatrician diagnosed as constipation.

But when Reilly suddenly complained that he couldn’t breathe, his mother rushed him to Bridgeport Hospital.

“We got there are 5 pm, but didn’t see a doctor until 10 pm,” Mrs O’Neill said. “After two hours in the adult emergency room, he was moved to the pediatric emergency room, where we waited three hours. By this time Reilly wasn’t complaining anymore, and I was very tempted to leave. But three other families left, so we kept moving closer to the front of the line.”

Tests, followed by more tests, soon revealed fluid in his left lung. He was transferred by ambulance to Yale Children’s Hospital, where more tests and surgery revealed that he had Burkitt’s lymphoma.

“It is the most deadly cancer because it can kill in as little as two weeks,” Mrs O’Neill said. “It doubles in size in 24 hours. Our doctors told us that there are only 200 to 250 cases in the United States each year. Yale has three cases.”

A tumor had filled Reilly’s abdomen, surrounding his organs and causing a fluid buildup in his lungs. “It was everywhere,” Mrs O’Neill said. “Doctors were afraid that it could cause the organs to fail.”

They put a portacatheter into his chest, through which they could insert a feeding tube, draw blood, and administer chemotherapy. “For eight days he was on clear liquids in preparation for surgery — he was bonkers, as angry as I’ve ever seen a person,” Mrs O’Neill recalled.

After the first two grueling rounds of chemotherapy, a CT scan showed that the cancer was almost gone. “But because it is a blood cancer — a type of non-Hodgkin’s lymphoma — that doesn’t mean it is actually gone,” Mrs O’Neill said. “Reilly will have two more rounds of chemotherapy — five in all — and if he is still clear then, maybe it is gone.”

Because chemotherapy can cause a significant reduction in infection-fighting white blood cells, Reilly has been back in the hospital three times for five to seven days at a time.

“He comes home, but after he has two or three good days — as soon as his white cells go up — he has to go back for more chemotherapy, every day for seven or eight days,” his mother said. “But the hardest part is giving him medicine. He is convinced that the medicine is making him sick.”

Reilly graduated from Fraser Woods Lower School last June. When friends and staff there and at Middle Gate heard about Reilly, they responded quickly. Denise Logan, a Middle Gate parent, called Fraser Woods and together with Polly D’Addario and others launched the sale of 1,000 blue bracelets bearing the words “Be Brave” to raise money to help the family.

Get-well cards, meals, and gifts have showed up spontaneously at the O’Neill home on Washbrook Road, where Reilly is now being home-schooled. Donna Waltzer, whose son Andrew is a first-grader at Middle Gate, plans to run June 5 in the San Diego Rock ‘n Roll Marathon in Reilly’s honor, raising money for the Leukemia & Lymphoma Society.

Dee O’Neill said the family feels blessed even though they have been through a lot in the past few years. Their son Daniel, now 4, was born with trigonchephaly, a cranial deformity in which the bones of the skull overlapped. He had to undergo 12 hours of surgery at the age of 4 months, leaving the family with substantial medical bills.

Mrs O’Neill operates a home-based business, The Wilton Art programs, that her mother started in the late 1970s.

“With the cutbacks in school budgets everywhere, I had to let go my two employees,” she said. “Now, with Reilly’s treatments, it is very difficult to operate the business and take care of my family, too.”

Kevin O’Neill, a mechanical engineer with an MBA in finance and business management, has been active in the community, serving as a member of the Economic Development Commission and other volunteer boards. But Connecticut’s weak business economy left him unemployed twice over the past three years. He recently found a job in Florida and is coming home on weekends, while the family tries to sort out its medical coverage and find out what will be covered for Reilly’s treatment, which will require at least a two-year follow-up even after the chemotherapy ends.

Last week Reilly was to begin the last round of chemotherapy, his sixth. But somehow his blood count was not checked, and when the oversight was noticed four days into the treatment, the methotrexate drug was purged from his system (a three-day process), and he was sent home to get his blood count up again. Treatment was expected to begin again late this week. The treatment involves four days of methothexate followed by five days of around-the-clock administration of another type of chemotherapy.

“Reilly has had two spinals every week, CT scans, biopsies, blood transfusions, injections — so much for a 6-year-old,” Mrs O’Neill said. He asked me, ‘Mommy, can you die of cancer?’ How do you answer him? I said, ‘You can, but you aren’t going to.’

“You never think something like this will happen to you,” Mrs O’Neill said. “But I haven’t done a step of this on my own. I’ve had people with me every step of the way. It gives you a lot of faith in mankind.”

Fundraising events are in the works. The student council at Hawley School raised money for Reilly; St Rose School and Religious Education are selling bracelets. Ricky’s Salon & Spa is planning a cut-a-thon on June 6. Anyone who wants to get involved with any fundraising can call Denise Logan at 270-1753.

Donations can also be made to the “Reilly O’Neill Medical Fund” at Newtown Savings Bank and at any branch of the Bank of America (mention that it is a BAC business account).