Victor Sciarrotta, 5, collects beads during doctor's appointments and hospital visits as he battles a very aggressive brain cancer. His mother, Amber Sciarrotta, said he "loves his beads" and that they lay them around on the floor to talk about all the things they represent. (Photo courtesy Alex Sciarrotta)
Cancer isn’t easy on anybody, but it’s especially tough on young children who can neither understand why they’re sick nor make decisions about their treatment. But for 5-year-old Victor Sciarrotta, who’s been battling an aggressive brain tumor since last October, there’s always a bright spot to going to the hospital— in fact, there have been more than 900 of them so far.
Victor is one of tens of thousands of children in eight countries whose medical caregivers gives him a bead every time he gets his dressing changed, has his blood drawn, or undergoes a surgery. Through the Tucszon, Ariz.-based nonprofit Beads of Courage, Victor receives a different-colored bead for other milestones, too: like getting a platelet or blood transfusion, completing an occupational therapy session, undergoing a round of chemotherapy, or losing his hair.
“He has over 927 beads,” Amber Sciarrotta, 39, Victor’s mom, told foxnews.1eye.us. “There may be even more because every now and then, we run out of the yellow beads, and those are for sleepovers at the hospital, and obviously we have a lot of those.”
Founded in 2005, Beads of Courage coordinates with health care workers at hospitals to help children suffering from serious illness cope with their treatment through art. Some patients have cancer like Victor, but others may have an incurable condition like cystic fibrosis, or a chronic renal or a gastrointestinal (GI) disorder.
“Financially, it’s been difficult ... and we’re just trying to stay afloat.”
Victor was diagnosed with a high-grade embryonal neoplasm, a brain cancer most common in children, Oct. 1, 2015. Since his diagnosis, most of Victor’s treatment has taken place at UCSF Benioff Children’s Hospital Oakland, where he is undergoing five rounds of high-intensity chemotherapy with a stem cell rescue approach.
“The idea behind this is we tried for years to delay or avoid radiation in these children with effectively no success, and there was no success until we took this very high-intensity chemotherapy with stem cell rescue approach,” Victor’s oncologist Joseph Torkildson, director of neuroncology at UCSF Benihoff Children’s, told foxnews.1eye.us.
This treatment has enabled doctors to avoid radiating two-thirds of the children who’ve suffered from cancers in the same group as Victor’s, but one-third don’t respond well to it. Victor, whose stage 3 tumor had already metastasized from his spine to multiple areas of his brain upon diagnosis, will be part of the latter group. He’s gone through the five rounds of chemo, but his tumor has only decreased by about 40 to 50 percent, Torkildson said.
“I would’ve loved to have seen it disappear,” Torkildson said.
Next, Victor will undergo the stem cell transplant then radiation. Because his family lives in Minden, Nev., Victor must spend three weeks at the hospital then home for one week, where he gets to play with his four siblings: Vinson, 12, Francesco, 9, Anthony, 7, and Anne Marie, 2.
Amber’s husband and Victor’s dad, Alex, 41, helps manage their family of seven by having Alex stay overnight with Victor at the hospital while Amber stays at their family home. Depending on Victor’s blood counts, Alex brings the other kids out to visit. Both Amber and Alex help manage the family business of conducting flood and fire restoration and mold remediation. Just before Victor’s diagnosis, they’d planned to break into the dry cleaning industry and tapped into their savings to buy equipment. They’re now fundraising to help cover Victor’s treatment on a GoFundMe.compage.
“Financially, it’s been difficult,” Amber said. “We’ve closed down one of the businesses, and we’re just trying to stay afloat.”
While sometimes Victor won’t want to eat, drink or talk at the hospital, he’s back to his normal self at home, running around and trying to wrestle with his brothers.
At the hospital, Victor passes time by watching videos of the world’s longest, fastest trains on YouTube or looking out his hospital window to see the BART train, the San Francisco Bay area’s regional rail service, whizz by on the nearby tracks.
“A lot of times, nurses will find a sticker to give to patients ... to acknowledge their courage, but we know stickers are disposable. Beads last forever.”
“It goes by 20 times a day or more,” Amber said. “Every time it passes by, he just says, “’The BART train!’”
Victor’s beads have also made his hospital stays easier.
“He loves his beads— we take them home and hang them up,” Amber said. Yesterday, Victor “wanted to wear all of his beads, so many beads that they were too heavy for him. We took ’em all off, and we just kind of lay them around and talk about them.”
Among Victor’s collection are three butterfly beads: one for each of three little friends he met in the hospital who have since passed away.
“One other friend is not doing well, and he’s back in the ICU, and I found out that there’s no more treatment for him,” Amber said. “It’s just so hard because it could just as easily be us.”
Beads of Courage started as a Ph.D. project by former University of Arizona nursing student Jean Gribbon, 41, the founder and executive director of the nonprofit. Gribbon was inspired to implement the program at Phoenix Children’s Hospital in 2003 then officially form Beads of Courage as a 501c(3) organization two years later after working as a pediatric nurse.
“Any pediatric nurse will tell you, you always have a compelling need to give your patients something not only as a reward but also to acknowledge the courage you bear witness to every day,” Gribbon, a registered nurse, told foxnews.1eye.us. “A lot of times, nurses will find a sticker to give to patients ... to acknowledge their courage, but we know stickers are disposable. Beads last forever.”
Torkildson, Victor’s oncologist, has been involved with Beads of Courage since he started at UCSF Benioff Children’s after 21 years of active duty in the U.S. Navy.
“I think one of the biggest things that has a negative impact on children who are going through [cancer] therapy is they effectively lose all control over their life,” Torkildson told foxnews.1eye.us. “[Beads of Courage] gives them the confidence that they’re able to make decisions for themselves and allows them to develop self-esteem.”
So far, Beads of Courage involves more than 6,000 health care workers in eight countries, including 240 children’s hospitals, and ships millions of beads annually to hospitals, where local nonprofits help coordinate the program. The beads are exclusively made through a handful of manufacturers, and they can’t be bought at common craft stores. Gribbon estimates roughly 60,000 children are actively receiving beads through the program, but due to patient confidentiality, she can’t be sure. Next, Gribbon said she plans to expand the nonprofit’s beads programs for siblings and parents of ailing children.
Among the various colors of beads it currently sends to hospitals, Beads of Courage receives more than 10,000 special “courage,” glass beads from bead artists skilled in the ancient art form of glass bead making.
“That category exists for those instances that occur in a child’s treatment journey where there isn’t a bead to give,” Gribbon said. “Those tend to be the more clinically devastating days— days they’re told, ‘We may have to amputate their leg because there’s no other option.’ The days they’re told, ‘You might be in relapse or be given palliative care.’”
“The best analogy is a well-decorated military official if you saw one in full uniform."
Victor received a courage bead when he had to fly in an airplane to UCSF Benihoff Children’s after suffering from a bad seizure. Just like his other beads, Victor keeps that one on one of the numerous necklaces he maintains.
“The best analogy is a well-decorated military official if you saw one in full uniform,” Gribbon said, describing the bead collections of children like Victor’s. “Even if you didn’t know the colors, you would stop and think, ’That person served their country in a meaningful way.’ I feel the same level of honor for those kids that can’t express all they’ve been through verbally and [that] people simply can’t comprehend.
“The beads make visible an experience that has remained invisible to people who can’t imagine the courage these children must muster every single day to live.”
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