VINCENT THE CONQUEROR
COMMUNITY RALLIES AROUND TOT BATTLING RARE BRAIN CANCER
Vincent Cary Nowroozi, 5 months old, is battling Atypical Rhabdoid Tumors (ATRT), a very rare and aggressive type of brain cancer. The baby has had several brain surgeries and is now undergoing high dose, intensive chemotherapy. The community is rallying around him and his family.
PROSPECT PARK » Fivemonth-old Vincent Cary Nowroozi was sleeping peacefully, seemingly unaware of the tubes extending from his young body or the horrific medical ordeal that he’s been through this summer or that’s in his future.
His parents, Ramin and Natalie, and sister Mina, 7, were gathered together on the couch, all looking somewhat exhausted, to talk about the ordeal of the past two months when their lives were turned upside down. Their living room is a sea of IV poles, gauze pads, tubing and other medical equipment. They cuddled baby Vincent and continually glanced down at him as they spoke, seeming like they still don’t quite believe the nightmare that has become their reality.
Ramin and Natalie were college sweethearts. The couple met at Temple University, where they both were working toward earning recreation therapy degrees. Natalie DeVaco Nowroozi lived in Delaware County her entire life, growing up in Tinicum and graduating from Interboro High School, Class of 1998. Ramin grew up in Huntingdon Valley, Montgomery County, and attended Lower Moreland High School. According to young Mina, her parents met at a college Christmas party where her dad was playing Santa Claus.
They married in 2005, and have made their home in Prospect Park for 11 of the past 13 years. The Nowroozi family became entrenched and active in their community, volunteering their time at the Prospect Park Swim Club, on the Fourth of July committee, as coaches for Prospect Park youth teams and Interboro Athletic Club and at St. James Regional Catholic School, where Mina will be entering third grade in September. Natalie re-established Prospect Park’s recreation board and became its president to improve local playgrounds.
In 2017, when Natalie found out that she was pregnant, the family was ecstatic — including Mina, who had waited a long time to realize her wish to become a big sister. Their precious baby son was born Feb. 12, 2018, at CrozerChester Medical Center.
According to Ramin and Natalie, their baby seemed perfectly fine at birth. They named him Vincent, which means “the conqueror.” Little did they know how much their little brave soldier would need to conquer.
At 3 months old, baby Vincent started tilting his head to the right and the pediatrician thought he had a condition called torticollis, which is often common when babies are in breech position in utero. The doctor sent him to physical therapy. After about only five visits to physical therapy, the parents and therapists began to doubt that torticollis was the issue because Vincent would cry during the therapy. They returned to the pediatrician, who realized that Vincent’s head had grown very rapidly — from the 60th to the 100th percentile — over the past two months. They suspected hydrocephalus.
Vincent was immediately referred to the Children’s Hospital of Philadelphia where the neurology department performed an MRI and told Ramin and Natalie that their tiny son had two brain tumors and they were almost positive they were malignant. The baby was admitted to CHOP’s intensive care unit on June 19.
“It all happened so suddenly — we were dumbfounded,” said Natalie. “He had no other symptoms but his neck, so we had no idea that it could be anything this serious. We felt like our world was ripped out from under us.”
The next day, Vincent underwent a 9.5-hour brain surgery to reduce the pressure on his brain. He also had two blood transfusions. Doctors were able to remove almost 50 percent of the tumor resting on Vincent’s ventricle. He suffered some significant motor loss on his left side from the surgery. The other tumor is inoperable because it is located on his brain stem.
When the biopsy results were received following the surgery, the Nowroozis world was further rocked — Vincent was diagnosed with having Atypical Rhabdoid Tumors (ATRT), a very rare and aggressive type of brain cancer with a dismal prognosis, particularly for children diagnosed under 6 months of age.
“They were brutally honest with us,” Natalie stated. “They told us there is a less than 10 percent survival rate, with no clinical studies available and limited treatment options.”
According to the Nowroozis, high-dose intensive chemotherapy is the only option because radiation, although proven to be more effective, cannot be done to
children under 2 because it can cause permanent brain damage.
In addition to the tumor removal, Vincent had to have a VP shunt permanently placed in his brain to drain the fluid and keep the pressure down. The original shunt malfunctioned, and he had to have another surgery to revise it. He also had a port placed in his chest for administering the chemo intravenously.
The family kept a bedside vigil next to baby Vincent until he came home from the hospital July 17. CHOP doctors allowed Vincent to be discharged since the Nowroozis live geographically close by and can bring baby Vincent for his weekly treatments or if there are any complications.
“My brother doesn’t look like he’s sick,” commented Mina, who also said that she is always making him books and writing him prayers. “When I hold him, he looks up at me and smiles. When he was in my mom’s stomach, I would always sing lullabies to him and he would fall asleep. Now when I sing him lullabies, he smiles at me.”
The baby’s chemo treatments are on 21-day cycles. If all goes well, he should begin round two during the first week of August. The Nowrozzis must bring Vincent back to CHOP twice a week to have his blood count checked.
“For the past month or so, Ramin and I were basically living at the hospital, at Vincent’s bedside, and trying to run home to see Mina as much as possible,” Natalie explained, “so it is really good now to be home as a family.”
Many in Natalie’s family live in the neighborhood, her mom just a block away, so they were able to easily step in to care for Mina. But even with the extra helping hands, life has been extremely tough for the Nowroozi family. The parents are taking turns sleeping since they need to monitor Vincent, post-op, around the clock. He is on a feeding tube since the chemo kills his appetite and he must continue to get nutrients.
Ramin’s father, Dr. Kosrow Nowroozi, although retired now, practiced at Thomas Jefferson University Hospital and Jeanes Hospital. His mother was a nurse.
“Thankfully, Ramin is a certified eilderness EMS first responder and he grew up having both parents in the medical field, so he knows what questions to ask and is familiar with a lot of this,” Natalie explained.
She said the couple had to learn a lot before being sent home to care for Vincent since he has to get medication around the clock. They attended classes to learn how to administer his feeding tube. It has been next to impossible for either parent to work during this critical time in their family when they are an integral part of Vincent’s home care and treatments and must be with him, 24/7. Both Natalie and Ramin are employed by Liguori Academy, an independent, private high school in Kensington, where Ramin is an administrator and Natalie is director of operations.
“It is very important for us to stay together as a family to do this for Vincent,” Natalie explained. “We must be with him at all times because we have to make constant decisions on his behalf. The doctors told us that nine out of 10 children have to be readmitted for complications, so we are trying our very best,to do everything right for Vincent and keep him home as long as possible.”
The family has reached out to specialists across the country who are working on Vincent’s case and trying to offer alternative strategies should the baby not respond to the chemotherapy treatments. Doctors at CHOP said they will not do any more than two rounds of chemotherapy if Vincent is not responding to the treatments by round two.
The Nowroozi family said they have been extremely touched by all of the community support that they’ve received during the last few months from those in St. Madeline Parish, St. James Regional Catholic School, the Interboro community, the Prospect Park Youth Club, Liguori Academy, Prospect Park Borough and so many others.
“We have always given to our community,” Natalie remarked. “Community has always been really important to us, but I never dreamed that we would someday be at the receiving end. We have been humbled by the amount of support we have received from our family, friends, community, past classmates and even strangers. We want to thank everyone who has reached out to us with offers to help, donations and words of support. We are focusing on getting through the next five minutes over and over. We mostly ask for everyone’s continued prayers for Vincent to lift him in love and positive vibes.”
Natalie’s sisters, Danielle Stewart, of Prospect Park; Andrea Kupprion, of Logan Township, N.J.; and Patty McGinn, of Woodlyn have joined together with other friends and relatives of the Nowroozi family to plan a Victory For Vincent benefit event to rally support for the family and relieve some of the financial strain caused by Vincent’s lengthy hospitalizations and other medical costs.
“Victory For Vincent” will be held from 7-10 p.m. Friday, Aug. 10, at Marty Magee’s Irish Pub, 1110 Lincoln Ave., Prospect Park. A $40 donation includes a buffet, open bar, photo booth, raffles and live music by Rob Dunleavy with Grace Manton and the Bughunters Band. Raffle items are growing daily and so far include a replica of the 2018 Eagles championship parade hat autographed by Jason Kelce; a signed Zach Ertz jersey; Metallica Club Box concert tickets; several designer handbags; Phil Collins concert tickets; overnight hotel packages in Atlantic City and other places; spa and “cheer” baskets; Flyers club box game tickets; an autographed Bernie Parent Flyers jersey; tickets to Eagles and other pro sports events, Dutch Wonderland and other destination; and much more.
Sponsorships of the event are available for $150. Among other perks, the sponsor will have their business or other ad shown continuously in a loop on 20 TVs during the event.
Tickets can be purchased through Eventbrite at del. co/v4v or on the Vincent the Conqueror Facebook page, facebook.com/vincenttheconqueror. Tickets and special awareness wristbands and T-shirts will also be sold at various upcoming community events throughout Prospect Park, including the Prospect Park Swim Club divisionals and athletic events at Witmer Field. Victory for Vincent benefit tickets will be sold at the door if they are still available. Those who wish to donate but cannot attend the benefit can contribute through the GoFundMe crowdfunding site at gofundme.com/vincentthe-conqueror.
“Vincent is the strongest person that I’ve ever known,” said Ramin lovingly as he closely held his tiny son. “He is battling stuff that I don’t think most adults would be able to take. He is a fighter, and we’ll be by his side for every second of the fight.”