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GREENVILLE JOURNAL
By Melody Wright – Jul 26, 2018

Flash was the name of Lockaby’s imaginary girlfriend when he was younger. The name came up when baby naming for the Tollison’s second child began — and it stuck. Little Katie Flash has gone by Flash ever since she was born. But Flash’s name isn’t the only rare thing about her.

One year ago, Flash was diagnosed with stage 3 neuroblastoma, a very rare cancer that forms in nerve tissue.

Flash is just one of more than 600 children in the Carolinas diagnosed with cancer each year, according to data from Children’s Cancer Partners of the Carolinas (CCP).

“You’re in shock when you hear your cancer diagnosis,” explains Flash’s mother, Kate Tollison. The past year has been a journey of visits to Greenville Hospital System, the Medical University of South Carolina, and Jacksonville, Florida, for Flash’s treatments.

In South Carolina, treatment for pediatric cancer is available only in Greenville, Charleston, and Columbia. Families of children seeking more-specialized care must travel out of state, adding to the families’ financial and emotional hardships.

The Tollisons are among 325 families affected by childhood cancer that CCP currently assists.

“All the money, everything they do, goes straight to the family,” Kate Tollison says. “Every cent that goes to [CCP] goes straight to making the lives of the children better.”

Currently working with 11 hospitals, CCP receives the names of families in need of assistance from hospital social workers. Within 24 hours of receiving that family’s information, CCP contacts the whole family to determine their needs and barriers.

“At CCP, our primary focus is getting Carolina children to the lifesaving treatments they need by providing families with funds for transportation, meals, and lodging associated with this vital care,” says Laura Allen, CCP executive director.

Headquartered in Spartanburg, CCP began in 2001 as a project of the Spartanburg Breakfast Optimist Club. Five years later, CCP became a 501(c)(3) nonprofit with the purpose of assisting families in Spartanburg County. After expanding in 2015, CCP extended its services from one county to 147 counties in the Carolinas.

“CCP is able to come alongside these hurting families and offer the critical support they need and opportunities for them to connect with others who are fighting cancer,” Allen says. “This helps them to overcome their sense of isolation and that feeling of being completely overwhelmed.”

Financial support takes on many forms — paying for airfare, Uber rides, hotels, meals, utility bills. But outside of travel, food, and lodging, CCP aids families in managing all the stressful details and tasks associated with pediatric cancer care.

Most parents of children with cancer are not prepared for the disease’s financial challenges. So, CCP provides financial literacy training for them to better cope.

For the children, many hospital visits include chemotherapy, ports, and other unpleasantries. To alleviate some of the pain and lift their spirits, CCP hosts fun events and activities that bring families together.

Camp Victory, an annual three-day summer event, allows the children to take a break and enjoy time with one another.

“The impact is tremendous,” Allen says of CCP’s programs. The partnership of CCP with hospital social workers gives families the necessary means to provide their children with the best available care.

“We need the people of the Carolinas to help the children of the Carolinas,” Allen says.

Eight-year-old Peyton Gesing was also diagnosed with neuroblastoma. Diagnosed at age 5, Peyton and his family were among the first in the Upstate to receive assistance from CCP.

“We would’ve been lost if we didn’t have them,” says mother Suzanne Gesing.

Peyton received treatment at Greenville Hospital System and also traveled to New York’s Memorial Sloan Kettering Cancer Center for a trial. Traveling to and from New York for the past two years, the Gesings were supported financially and emotionally by CCP.

To help children like Flash and Peyton and support CCP’s efforts, visit www.childrenscancerpartners.org to donate money or contact CCP to supply items needed by the families.

upstatebizSC
July 26th, 2018

Children’s Cancer Partners of the Carolinas (CCP) announced that Shannon Brown, MSW, LISW-CP, has been named Director of Family Programs. CCP is a 501(c)3 organization with a mission to provide comprehensive support and loving compassion to families whose children are battling cancer to improve their overall quality of life. The nonprofit serves children and families throughout SC and NC.

“Shannon is an extraordinary addition to our team,” said Laura Allen, Executive Director of CCP. “She brings a wealth of experience and knowledge related to supporting families as they journey through a health related crisis and as a childhood cancer survivor herself, she has a unique understanding of what they are going through. We are excited to have Shannon leading our family advocacy efforts to ensure access to care and connection to critical resources for the growing number of children and families served by Children’s Cancer Partners.”

Brown, a resident of Moore, SC, earned her bachelor of arts at Emory University and a Master of Social Work with a certificate in Marriage and Family Therapy from the University of Georgia. Much of her career has been committed to supporting and advocating for individuals battling cancer and other diseases. Brown interned with the Loran Smith Center for Cancer Support in Athens, GA, served as a Patient Resource Specialist for the American Cancer Society’s Patient Service Center and as a Clinical Social Worker at the Children’s Blood & Cancer Center of Dell Children’s Medical Center in Austin, TX. A licensed social worker in both NC and SC, most recently she was a part of the social work team at Duke University Medical Center’s Pediatric Hematology Oncology Department. As CCP’s Director of Family Programs Brown’s role is to develop and oversee strong programs that fulfill the mission of the organization through meeting the needs of the families it serves.

“We are thrilled about the expertise and skill set Shannon adds to our CCP team as we continue to expand our reach across the Carolinas,” said Allen. “The needs of our families are varied and often complex. Shannon is well prepared to guide our efforts to address those needs in a very personal, professional and individualized manner.”

Started in 2001, CCP grew from a project of the Spartanburg Breakfast Optimist Club. The organization first existed to help families in Spartanburg County, SC but has now expanded its reach to encompass families throughout all of North and South Carolina.

Children are referred to CCP by social workers at their pediatric oncology treatment centers. After identifying specific needs, CCP continues to partner with them throughout their childhood cancer journey until the child reaches the age of 21. The nonprofit provides transportation, food and lodging for families who travel great distances frequently to obtain the lifesaving treatment their children need.

On Hope Remains Ranch’s 11-acre property, two-year-old Dredger Lanier stood in front of a small, wooden horse, throwing colorful hoops at its head and smiling when one looped around its ears and slid down its straight neck.

Katrina Lanier, Dredger’s mother, said for the past three months- ever since Dredger was diagnosed with cancer – the toddler’s life has been full of visits to the hospital and aggressive treatments.

Standing at the ranch and watching her son play, Katrina said she was just happy to see him enjoying himself.

“He loves it,” Katrina said.

Dredger was one of 22 children with Children’s Cancer Partners of the Carolinas’ Camp Victory who spend Monday morning at Hope Remains Ranch riding horses, playing corn hole, taking wagon rides – far from the world of beeping chemotherapy machines and needle pricks.

“We’ve been going through with treatment and it’s pretty intense right now,” Katrina said. “Right now he’s at a high risk and we’re in the middle of a 60-day treatment. He just got off of a three-week break because his counts weren’t high enough yet. So we just started this week and it’s rough… It’s nice just to get out.”

Melanie Watt, CEO of the ranch, said she started taking horses and ponies to Camp Victory several years ago and last year, campers came to the ranch for the first time. Watt said she’s glad the children from Camp Victory now have an opportunity to experience the ranch more fully.

“It’s great to partner with them and love on these kids and love on these families,” she said.

CCPC Executive Director Laura Allen said giving children outings like the one at Hope Remains Ranch helps families take their minds off of the challenges they’re facing and builds bonds between people going through similar hardships.

“We always invite siblings and we invite the parents because cancer can be a very isolating disease for children and for families,” she said.

For the past month, Esther Silva, 4, has been talking constantly about a chance to see the horses at the ranch, said Claudia Silva, Esther’s mother.

“She thinks about this all the time,” she said. “She has tiny horses in our house. So it’s her dream. I have no words to thank all of these people who are helping us.”

Allen said giving children like Dredger and Esther a chance to feel like normal kids is an amazing experience.

“These are the times that we want our kids to forget about cancer and be kids and do all those joyous, fun things,” she said. “Most of the time, they’re on a journey back and forth getting chemo, or sitting at a clinic, or seeing a doctor and being poked and prodded and these few days of camp today, camp in July and camp in early June allows them to not worry about any of that.”

Children’s Cancer Partners of the Carolinas (CCP) recently announced that Marisa Cecil has been selected as the nonprofit’s new Director of Development. CCP is a 501(c)3 organization with a mission to provide comprehensive support and loving compassion to families whose children are battling cancer to improve their overall quality of life. The nonprofit serves children and families throughout SC and NC.
“A native of SC, Marisa has dedicated much of her career to increasing support for Carolina families grappling with a cancer diagnosis,” said Laura Allen, Executive Director of CCP. “She brings a tremendous amount of expertise in the Development arena to our team. We are thrilled to have her on board and helping lead our efforts to increase resources for the growing number of children and families served by Children’s Cancer Partners.”
Cecil is a resident of Boiling Springs and received her bachelor of arts in journalism and mass communications from the University of South Carolina. She joined the Spartanburg Regional Foundation team as Director of Philanthropy in 2015 after serving the Spartanburg Regional Healthcare System in other roles since 2009. In her most recent position Cecil directed all Heart and Cancer Division fundraising initiatives for the foundation. Previously, she served as a Physician Development Consultant and as a Clinical Research Physician Liaison and Radiation Oncology Medical Patient Representative for the Gibbs Cancer Center and Research Institute.
“Marisa will be a tremendous asset to our CCP team as we continue to expand our reach throughout the Carolinas,” said CCP Board Chairperson, Shelia Ingle. “With the growth of our organization comes the need for additional support from the local communities where our CCP children reside. With Marisa’s experience she is well prepared to successfully match the needs of our children with philanthropists who desire to lend a helping hand to struggling families so they can focus on the day-to-day challenges of their child’s battle with cancer.”
Started in 2001, CCP grew from a project of the Spartanburg Breakfast Optimist Club. The organization first existed to help families in Spartanburg County, SC but has now expanded its reach to encompass families throughout all of North and South Carolina.
Children are referred to CCP by social workers at their pediatric oncology treatment centers. After identifying specific needs, CCP continues to partner with them throughout their childhood cancer journey until the child reaches the age of 21. The nonprofit provides transportation, food and lodging for families who travel great distances frequently to obtain the lifesaving treatment their children need.
“With over 600 new pediatric cancer diagnoses made in the Carolinas each year, our mission remains the same – getting all children to lifesaving cancer treatment regardless of family circumstances,” explained Allen. “Enhancing our team with such a strong and skilled advocate for cancer families like Marisa will significantly advance this mission and impact the lives of our courageous children.”

The Childhood Cancer Star Act of 2017 is now law, a landmark moment for the childhood cancer community. You can find a summary of the new law, signed on June 5, 2018, below.

The passage of the STAR Act was a true community effort that involved years of patience, hard work, and collaboration. The childhood cancer community and Children’s Cancer Partners of the Carolinas (CCP) are grateful to our many champions in Congress, who successfully shepherded this bipartisan bill through both chambers. As a friend of the Coalition Against Childhood Cancer, we were proud to play a role in advancing and advocating for this legislation alongside CAC2’s advocacy partner coalition, the Alliance for Childhood Cancer, and the entire childhood cancer community.

Meaningful legislation that represents a consensus of community priorities is difficult to craft and even more challenging to pass through Congress. The STAR Act is a milestone achievement that demonstrates that people and legislators can work together to address the challenges faced by families of the 16,000 children diagnosed with cancer every year.

“We applaud these advances at the national policy level, and look forward to future practical benefits that will make life a little better for our children and their families,” said CCP Executive Director Laura Allen. “Meanwhile, we are working hard every day to overcome the dreadful inequities that make childhood cancer such an overwhelming challenge for all families, especially those in rural and low income circumstances.”

CCP encourages families impacted by childhood cancer to reach out and thank their Senators, Representative, and the President for passing this life-saving legislation. Our community needs ongoing support from lawmakers to secure the appropriations required to enact the provisions of this new law.

Law Summary: The STAR Act amends the Public Health Service Act to authorize the National Institutes of Health (NIH) to provide support to collect the medical specimens and information of children, adolescents, and young adults with selected cancers that have the least effective treatments in order to achieve a better understanding of these cancers and the effects of treatment.
The national childhood cancer registry is reauthorized through FY2022 and revised to authorize the Centers for Disease Control and Prevention to award grants to state cancer registries to improve tracking of childhood cancers.
The Department of Health and Human Services (HHS) may: (1) support pilot programs to develop or study models for monitoring and caring for childhood cancer survivors throughout their lives, (2) establish a task force to develop and test standards for high-quality childhood cancer survivorship care, and (3) carry out a demonstration project to improve care coordination as childhood cancer survivors transition to adult care.
HHS must convene a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors.
The NIH may support research on: (1) outcomes for, and barriers faced by, pediatric cancer survivors within minority or medically underserved populations; and (2) follow-up care for pediatric cancer survivors, including research on the late effects of cancer treatment and long-term complications.
The Government Accountability Office must make recommendations to address barriers to childhood cancer survivors obtaining and paying for adequate medical care.