Benefit on Friday for Lockport teen with ‘too many tumors to even count.’

When Mary Ellen Gincauskas’ son Vinnie Gincauskas began complaining of stomachaches on school mornings, she said she assumed they were because of freshman return-to-in-person school jitters.

Mary Ellen even took Vinnie to the doctor to be sure and received the non-specific diagnosis of gastritis, which was attributed to stress, especially since Vinnie had symptoms only in the early morning, she said.

Five months later, in March, Mary Ellen had enough. She took Vinnie to an emergency department to “call his bluff” – and found out Vinnie had a rare cancer.

“Benefit for Vinnie’s Voyage” will be held from 4 to 11 p.m. Friday at the Lockport American Legion. Mary Ellen said the benefit is mainly to show support to Vinnie and for Vinnie’s family to express their gratitude for the support.

The amount of support the family has received since Vinnie’s diagnosis is overwhelming, Mary Ellen said.

“After everything that has gone on in the world these last couple of years, this really shows the good in the world and that there is still love in the world,” Mary Ellen said.

A flyer promoting the fundraiser said Vinnie has volunteered in Lockport’s Haunted Hayride and at the Lockport Resource Center. He likes antiques, history, musicals, theater and knows “every detail” about the Titanic.

And he is not letting cancer define him, Mary Ellen said.

“I feel like everything is going to be OK,” Mary Ellen said. “I just have faith that God is with us and God has a plan. Somebody told me once that our children are borrowed to us from God and at any one point God can want them back. They’re ours, yes. But ultimately, they’re God’s. And it’s our job on earth to make it sure they make it back to God.”

A simple ultrasound led to Vinnie’s diagnosis. Mary Ellen stayed with Vinnie during the ultrasound, perplexed as to why the technician kept measuring masses in Vinnie’s abdomen. Mary Ellen said she assumed either the technician was new or the machine was malfunctioning – until a second technician joined the first one.

At one point, Mary Ellen overheard the following outside her door: “OK, now we need to tell his mom we found these masses.” Soon afterward, Mary Ellen learned Vinnie had numerous masses in his abdomen and was being sent to Lurie Children’s Hospital in Chicago.

“I thought, ‘You’ve got to be kidding me! The stomachache all this time has been something real?’ ” Mary Ellen said. “I was just in disbelief. And he’s sitting there, all fine. He was OK and I’m freaking out.”

Vinnie has desmoplastic small round cell tumors or DSRCT. This is an extremely rare soft tissue sarcoma occurring in white males between the ages of 10 to 30, according to the National Cancer Institute.

DSRCT has no symptoms in its early stages. This cancer is so rare, no standard of care exists and the five-year survival rate is less than 15%, according to the institute.

“I told my husband I just wanted to go outside and scream,” Mary Ellen said. “It was so devastating to know your 15-year-old has to face this.”

A team met Mary Ellen and Vinnie at Lurie, she said. Vinnie had more tests and biopsies, Mary Ellen said. Vinnie had tumors in the lining of his lungs, in his liver and his upper and lower abdomen, she said.

“Actually he had too many to even count, to even measure all of them,” Mary Ellen said. “Oh, my gosh, the guilt I felt for wanting to ground him for not going to school on time. I’m like, ‘Oh, my God! This kid has been living with this for so long. All he did was complain of a little stomachache. How did he keep going?’ ”

Vinnie’s treatment includes six rounds of chemotherapy followed by surgery, then more chemotherapy and then radiation, Mary Ellen said.

Mary Ellen said Vinnie’s stomachache is gone, a good sign the chemo is doing its job. He was scheduled for more scans on June 8 to see how the tumors responded to those six rounds.

When Vinnie does have surgery, he will also have hyperthermic intraperitoneal chemotherapy (HIPEC), a two-hour procedure where his abdomen will be washed with chemotherapy, Mary Ellen said.

The goal is to eliminate the cancer permanently, Mary Ellen said.

“Hopefully, we can prevent it from happening again,” Mary Ellen said. “But it’s very aggressive. It could come back. But we’ll just fight it again. We’re ready.”

IF YOU GO

WHAT: Benefit for Vinnie’s Voyage

WHEN: 4 to 11 p.m. Friday

WHERE: Lockport American Legion, 15052 Archer Ave. Lockport

TICKETS: $20. Includes food and two drink tickets (draft beer or pop). Tickets available at door or by contacting Jenny DiGiovanni at 815-955-0548 or jdigio@comcast.net or Frank DiGiovanni at 815-955-0547 or fdigio@comcast.net.

DONATE: gofund.me/5fe13814