Cancer Warrior, Vincent Nowroozi

Fourth and Gold highlights a cancer warrior that has bravely and fiercely stood strong against childhood cancer. At Fourth and Gold, we want you to see the faces behind our drive and connect with them in a way you wouldn’t have been able to if you didn’t take the stand to demand #MoreThan4. These Fourth and Gold warriors have cancer, but cancer does not have them.

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Vincent Nowroozi, aka Vincent the Conqueror, diagnosed with Atypical Teratoid Rhabdoid tumors (ATRT)* at 4 months of age

Current Age: 15 months (DOB 2/12/18)

Events leading up to his diagnosis, told by Vincent’s mom, Natalie: “At 3.5 months old, Vincent developed a sudden slight head tilt to the right. We took him to the pediatrician who said that it was a common newborn condition called Torticollis and that he needed to have physical therapy. After a few session of physical therapy, I didn’t think that torticollis was the correct diagnosis and went back to the pediatrician. This time the pediatrician was concerned about the rate at which Vincent’s head circumference grew over a 2 month period and sent us to Children’s Hospital of Philadelphia for a neurology consult. The neurologist ordered an emergency rapid MRI and we learned that our 4 month old baby had multiple masses in his brain. One tumor was 9 cm and destroying the right atrium of his brain, the other was smaller and located next to the brain stem making it inoperable.” 

Favorite things Vincent likes to play with or watch: Vincent has spent over 150 days in the hospital causing him to be significantly delayed in his milestones. While most babies are getting active play therapy at home, Vincent was fighting for his life. He has just started catching up on a few milestones and loves to bounce to music, shake beads and tap toys like blocks. His big sister is his favorite entertainer. Vincent is beginning to take an interest in watching Little Baby Bum nursery rhymes and playing with Little People figurines. As you’ll see in the photos below, Vincent has an infectious smile that he loves showing off and he loves to laugh and be with people.  

Favorite foods: Vincent has not had any food by mouth since his diagnosis at 4 months old and he currently gets nutrition through an NG tube, but he recently started “tasting.” Vincent likes to lick ice cream, donuts and bacon!

Typical day looks like: A typical Monday through Friday for Vincent consists of getting up and helping get his big sister Mina ready for school. After Mina is dropped off, Vincent heads to the hospital for his daily rehab appointments consisting of physical, occupational and speech therapy. Some days, Vincent goes to clinic for lab draws, chemotherapy, infusions or whatever else he may need to support his system. On other days, Vincent often has tests, scans and/or any other imaging he needs. Every day is different. If Vincent is feeling good, he goes home and does more therapy through play with his family. Because childhood cancer is so unpredictable, there is always a chance Vincent will need to be admitted into the hospital for neutropenic fevers or other complications. Vincent and his family always have a bag packed and ready.

If you know Vincent you know that he: is a miracle and the happiest baby despite everything he has been through. (As evidenced by his beautiful personality below!)

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• What you cannot see here is that Vincent has endured:
• 3 craniotomies
• A shunt inserted into his brain
• A port placed in his chest
• 3 shunt revision surgeries
• An abdominal drain
• Being put on a ventilator several times
• More blood, platelet, and plasma transfusions that his mom can keep track of, well over 150 transfusions
• Last month, Vincent suffered acute liver failure due to toxicity from his chemotherapy and required a continuous platelet transfusion for 5 days. The continuous platelet transfusion was the first time it was done at Children’s Hospital of Philadelphia. Vincent’s family watched them hang bag after bag of platelets for days, only stopping to transfuse blood, plasma, or cryo
• Countless MRI’s, CT scans, ultrasounds, x-rays, lumbar punctures, and general anesthesia procedures

Vincent’s mom, Natalie, on the Hardest part about having a child with cancer:  “Everything. Not being able to help your child, stop their pain, and make it better for them is crippling and makes us feel helpless as parents. We also struggle significantly with having to care for our older daughter while trying to save our sons life, making sure she has the support she needs while being shuffled between family helping to care for her and making sure she feels loved has been almost impossible. We can not make this go away for either of our children.” 

One thing you wish people knew about childhood cancer: “Cancer affects the entire family…. parents, siblings grandparents, aunts, uncles….and there is very little support and help to manage the emotional and financial toll it takes.” 

How has childhood cancer impacted your lives the most: “Our life, the life we knew before cancer, is over. Things will never be the same or normal again. We live 5 minutes at a time, not knowing what the day will bring or if there will be a tomorrow. We are not the same people we were 11 months ago and our daughter’s life will be forever altered by having a sibling with cancer. ” 

Social Media Page: Victory 4 Vincent

————————————————————————————————————————-May is National Brain Tumor Awareness Month so highlighting Vincent’s heroic battle with AT/RT is extremely important to us. Vincent has been fighting for his life since he was 4 months old. In 11 months, Vincent and his family have suffered through the unimaginable. Although we tell you what he’s endured in words, no words can possibly accurately describe the heartache, the roller coaster and the uncertainty Vincent and his family have gone through.

Brain and CNS tumors are the most common cancer in children 0-14 years in the United States and are the leading cause of solid tumor related deaths in children between the ages of 0-14. Brain tumors are often located in the control center for thought, memory, sensation, emotion, vision and movement, and therefore, their effects can be particularly devastating (PLGA Foundation). Currently, brain tumor research is under-funded. The public remains unaware of the magnitude of this disease and that is where Fourth and Gold comes in. Our hope is that by us putting a beautiful warrior face to the forefront of your mind, it will encourage you to help us fund better treatment options.

Less than 4% of NIH/NCI’s budget is directed at childhood cancer research with a miniscule fraction of these funds being utilized for targeted children’s brain tumor research. In fact, only 2 new treatments for brain tumors have been approved in the past 25 years! (PLGA Foundation). The cure rate for brain tumors is significantly lower than that for other types of childhood cancer. Childhood cancer is considered “RARE”, yet 43 children per day or 15,780 children per year are expected to be diagnosed with cancer.

I have been a pediatric oncology nurse for 2 years and interviewing Vincent’s mama has been one of the hardest things I’ve done. I can feel the rawness, the transparency and the heartache in her responses. She is the absolute definition of a warrior mom, giving her all when she feels she has nothing left to give. Vincent and his family need our help.

Treatments for children with cancer are limited and can be very devastating. Many parents will tell you that the treatment is so harsh and so outdated that it has or almost has killed their child. We’d love for you to help us close this gap between pharmaceutical companies and childhood cancer research by considering making monthly donations to the research foundations below:

Cure Childhood Cancer

Beat NB

Pediatric Brain Tumor Foundation

St. Baldrick’s Foundation

Alex’s Lemonade Stand Foundation

Want to do your part, but look good while doing it? These companies give to childhood cancer research based off a percentage of their profit:

Fourth and Gold -> Donates 100% of profit in September, 50% all other months and donates a warrior shirt to a child with cancer with every purchase made

Love Your Melon-> Donates 50% of profit and donates a LYM beanie to a child with cancer with every beanie sold

Five Below -> Donates regularly to Alex’s Lemonade Stand Foundation

On behalf of precious Vincent and 42 other kids who will get diagnosed with cancer today, please help us in the uphill battle that is childhood cancer. Awareness, funding and dedication to changing the research world of childhood cancer is severely lacking. Don’t wait until it’s someone you know. It takes a village… please join ours and #GoGrayInMay!

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**Atypical teratoid rhabdoid tumor (ATRT) is a fast-growing cancerous tumor of the brain and spinal cord. About half of these tumors begin in the cerebellum or brain stem (St. Jude’s Research Hospital).

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