Teens with cancer in cancer loungeImagine being a teenager who spends lonely weeks on end in a cramped hospital room, fighting for your life. While your friends are tweeting and hitting the pizza parlor, you’re tethered to an IV. If you happen to be a teen in St. Barnabas, Robert Wood Johnson University Hospital, University Hospital at UMDNJ, or eight other hospitals around New Jersey, fortunately this isn’t your fate. Thanks to the Alicia Rose Victorious Foundation (ARVF), teenagers with cancer and other serious illnesses can still enjoy things their healthy friends are experiencing.

The idea for Teen Centers came from Alicia DiNatale, a 17-year-old from Voorhees, NJ who tragically died in 2002. While she was spending long stretches in the hospital for cancer treatment, she noticed there was a specially decorated room for young kids to watch TV or  to color, but there wasn’t a comparable place for teen patients to go.

After Alicia died, her parents made such a place a reality for others. These spaces now are equipped with computers, movies, video games, and an area to socialize with other teens. With the help of hospital staff, many young patients can have pizza parties, movie nights, and other events.

Alicia’s Illness

In the summer of 2001, Alicia began feeling tired and achy. After she fainted while on vacation, doctors discovered fluid around her lungs and enlarged lymph nodes. On the first day of her sophomore year in high school, she was admitted to the hospital. She would spend most of that year there.

Alicia was diagnosed with adenocarcinoma of unknown primary site. While adenocarcinoma isn’t rare, when the origination site cannot be determined, there’s no roadmap for treatment. According to her father, Mario, it’s an adult disease that afflicts only about five kids per year in the U.S. With a 1 percent chance of survival, the DiNatales fought for that slim chance. They gathered experts in the field whose treatment was, at first, successful.

“Her cancer started to diminish,” says Mario. “Her tubes finally came out, her fluid wasn’t building up, she was stronger, and we went on a Make-a-Wish cruise. [The doctors] said [treatment] was killing 98 percent of the cancer, but the 2 percent that was getting through was the part they were worried about. Just before we went on the cruise, the chemo stopped working.”

Alicia was in and out of the hospital for 13 months. Nevertheless, she insisted on home schooling so she could finish her sophomore year. Her class schedule included honors courses and a gifted and talented class, and she completed every assignment. She even had a role in the school play, attended homecoming, and got her driver’s permit.

Teaching the Teachers

According to Alicia’s mother, Gisele, one of the few days Alicia was able to get to school, she wore a bandana to cover her head, which was bald from chemotherapy. Gisele remembers the bandana matched Alicia’s outfit and she had her nails done, wore make-up, and looked beautiful. Though Alicia’s teachers were aware of her illness, many other teachers in the school were not.

“Four teachers in the high school stopped her and told her to take the 
bandana off, that she wasn’t allowed to wear it,” Gisele says. “By the fourth one, she and her friend actually laughed, and her friend said, ‘Don’t you know she has cancer?’ The teacher said, ‘You know you shouldn’t kid around about that’.”

That experience launched Bandana Days, special days when students pay one dollar for the right to wear bandanas. Bandana Days in public and private schools help create awareness about cancer and collect money for the foundation’s works in helping other teens live the most normal life possible while in the hospital.

The Alicia Rose Victorious Foundation Is Born

While taking on such an endeavor so soon after their daughter’s death was difficult, Mario and Gisele felt Alicia’s guiding hand. “By developing this room and this foundation, it kept her memory alive,” 
Mario says.

In addition to building Teen Lounges, ARVF distributes about 2,000 kits each year to teen patients. The kits are filled with necessities such as phone cards, journals, playing cards, and other comfort items. For more information, visit the Alicia Rose Victorious Foundation.

Sites & Sources

Since 2002, more than 50 Teen Lounges have been funded nationally in 32 states, and internationally in Canada and England; they’ve assisted more than 43,500 teens with cancer and their families. In New Jersey, the Alicia Rose Victorious Foundation has touched the lives of critically ill teens and their families with lounges and/or kits in the following hospitals:

  • Cancer Institute of New Jersey, New Brunswick
  • Children’s Regional Hospital at Cooper, Camden
  • Joseph M. Sanzari Children’s Hospital at HUMC, Hackensack
  • K. Hovnanian Children’s Hospital at Jersey Shore University Medical Center, Neptune
  • Newark Beth Israel Medical Center, Newark
  • Robert Wood Johnson University Hospital, New Brunswick
  • St. Barnabas Medical Center, Livingston
  • St. Peter’s University Hospital, New Brunswick
  • University Hospital at UMDNJ
  • University Hospital FXB Clinic, Newark
  • Virtua Health, Voorhees

Terri B. Akman is a preschool teacher and freelance writer from Voorhees, NJ. Visit her blog at preschoolteach.blogspot.com.