Fundraiser will benefit youngster fighting rare cancer

DOVER — Monica Sipes’ world changed forever on Aug. 3.

That’s when she found out her 5-year-old son, Nicholas, has a rare cancer — Poorly Differentiated Chordoma — that’s typically diagnosed in adults.

“When he was first diagnosed, they wouldn’t give us a prognosis because it’s so rare in kids,” said Mrs. Sipes.

An effort is being made to help Nicholas and his parents with medical bills and other financial concerns. Frank Coleman, owner of Eastern Shore Seafood in Smyrna, is organizing an all-you-can-eat crab feast with all proceeds benefitting Nicholas and his family.

The benefit will take place on Saturday in Dover.

This will be the second year Mr. Coleman and his company are holding a benefit like this.

“It’s the second year Eastern Shore Seafood had done everything ourselves,” he said. He noted the company has raised funds for individuals in need in the past by collecting donations.

“I decided last year to do this every year,” he said.

Mr. Coleman said he first heard of Nicholas Sipes from a fellow Ducks Unlimited committee member, Darren McMillan. Darren is Mrs. Sipes’ brother and Nicholas’ uncle.

“I was looking for someone to benefit, and I was asking around and Darren told me about his 5-year-old nephew who had just been diagnosed with cancer,” he said.

The benefit includes a live and silent auction. Mr. Coleman said the community has stepped up to donate items for the event. Donations have poured in from Sayers Jewelers, RPJ Waste Services, and others. Mark Wilson, of Dover, donated the space, his private lodge, for the event.

“A lot of people are coming together to make this happen,” said Mr. Coleman.

From swollen neck to cancer

Nicholas’ symptoms started as what Mrs. Sipes and her husband, Mike, thought was a swollen lymph node possibly caused by an infection. Nicholas was placed on antibiotics.

At the same time, Mr. and Mrs. Sipes and other family members noticed that Nicholas was always tired.

“He was extremely lethargic and had no energy,” she said. “He wasn’t being a 5-year-old energetic boy.”

Mrs. Sipes said her intuition told her there was more going on than a simple infection.

“I told my dad that I thought something was wrong,” she said.

When the family gathered to celebrate the Fourth of July holiday, Mrs. Sipes said Nicholas took a four-hour midday nap. That’s out of the ordinary for a boy who is usually spending his summer days swimming and running around the house. Nicholas also refused to eat pizza, his favorite food.

The next morning, Nicholas experienced another alarming symptom.

“He woke up the next morning, and his voice had changed,” said Mrs. Sipes. “He sounded like Kermit the Frog.”

With this new symptom, Mrs. Sipes scheduled another appointment for Nicholas. This time, Nicholas’ pediatrician took one look at him and knew he had more than just an infection.

A CT scan would show he had a mass at the base of his skull and the vertebrae in his neck.

Nicholas was taken by ambulance to Johns Hopkins Hospital in Baltimore.

The doctors there called in an oncologist, and Mrs. Sipes said she knew then that something was very wrong with her son.

“I knew at that point that it was cancer,” she said. “They don’t call in an oncologist unless they’re sure.”

Nicholas was admitted to the hospital that weekend and had to undergo a tracheostomy to open up his airway.

Within a few weeks, Nicholas started an intense chemotherapy schedule that takes place over 12 weeks. Nicholas has already endured one four-day hospital admission to receive his treatments and he will be entering the hospital again this week, just before the benefit is being held for him.

“An amazing community”

The family will then go again for an overnight stay in October. At the end of that month, the Sipeses will know whether Nicholas will need surgery and radiation.

“We just don’t know,” said Mrs. Sipes. “Life is so uncertain.”

In addition to worrying about her son’s health, Mrs. Sipes said she and her husband are now faced with growing medical bills and a loss of income.

The family lives in Queenstown, Md. Mrs. Sipes has taken an unpaid leave of absence from her job with Kent County Public Schools. She said she was scheduled to return to work on Aug. 27, a mere month after Nicholas’ diagnosis, but found that she couldn’t work due to Nicholas’ health. With a compromised immune system from the chemotherapy, he cannot attend school.

“I had one month to figure out our life,” she said. “He couldn’t go to school. He couldn’t go to daycare.”

A native of Delaware, Mrs. Sipes said she and her husband have been overwhelmed by community members like Mr. Coleman and others stepping up to offer support.

“We’re incredibly blessed and extremely humbled by the love we’ve gotten,” she said. “Every penny helps us pay our bills and keeps a roof over our heads.”

One community group that offered support is the faculty, staff, and students at Lake Forest High School, where Mr. Sipes teaches math and coaches golf. The school held a pep rally on Sept. 7 when several members of the Lake Forest School District community shaved their heads in solidarity with Nicholas.

The high school collected $1,100 for the Sipes family during the pep rally. Of that total, Mrs. Sipes said $300 was raised by the students.

“The kids put their own money in it,” she said.

In spite of the obstacles facing Nicholas in the months to come, Mrs. Sipes said she has found strength in her faith and found hope in the outpouring of support from friends, family, and others like Mr. Coleman.

“I’ve always had strong faith,” she said. “Thank God we have an amazing community.”

The Nicholas Sipes benefit will be held from 4 to 8 p.m. on Saturday, Sept. 22 at Wilson’s Lodge at 115 Moorton Road in Dover. Tickets to the benefit are $30 per person and include all-you-can-eat crabs and sweet corn, soda and water. Ticket holders are welcome to pack a cooler and BYOB for the event.

Mr. Coleman said he hopes community members who attend the benefit for Nicholas walk away feeling inspired and that the event has a lasting impact on those who support its mission.

“I hope people would keep in mind that there’s others less fortunate than they are and to be more kind in a cruel world,” he said. “You never know who cancer might choose next.”

Those interested in purchasing tickets for the benefit or donating items for the silent and live auctions can call Eastern Shore Seafood at 302-653-5294 or visit the store at 2626 S. DuPont Boulevard in Smyrna. All proceeds from the event will benefit Nicholas and his family.

 

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