Forest Companion Magazine

By Jessica Ayala

April 2020

 

Tell us about Children’s Cancer Partners of the Carolinas? How long has it been active and what is
the mission?

Cancer is the #1 disease killer of children in the Carolinas, attacking over 600 more children every year. One in five will not survive, but the children of rural or poor families are three times more likely to be misdiagnosed, under-treated and die. There are very few places that treat children – just six in NC, just three in SC … none have all the treatments and many children must go to New York, Houston, or beyond for specialized care. An extraordinary organization helping children battling cancer all across North and South Carolina, CCP was started back in 2001 as a local service project in Spartanburg, SC, and helped 100 families across its first 14 years. Then it was “discovered” by a distant philanthropic couple who challenged the organization to do more with a major, multi-year gift. Since then, in just 3½ years, it has grown from one county to 146 (entire Carolinas) and from 20 children to nearly 1,000 today, providing families with support for treatment, transportation, lodging, meals, and essential home-care. If financial burdens overwhelm families, CCP helps avoid evictions, repossessions, insurance cancellations. If the battle is lost, CCP helps with funeral expenses and grief counseling – as it did 50 times in 2019.

When did you join the board of this organization and what drew you to the cause?

I joined the Board of Children’s Cancer Partners of the Carolinas in 2018 after being contacted by Laura Allen. Laura and I were friends in Nashville, TN, for many years. We were both very involved in many community organizations together, especially the Monroe Carell Jr. Children’s Hospital at Vanderbilt where we both worked in the Development office. Laura moved to Spartanburg, SC, and is the Executive Director of Carolina Cancer Partners of the Carolinas. Her enthusiasm for the organization, it’s mission and focus are contagious. She has an overwhelming making a difference desire to help the children in NC and SC who have been given a cancer diagnosis and their families. The organization and its outreach have grown tremendously and helped so many. This board was a natural fit for me. I am so proud to be part of their mission.

Who does the organization serve and how do they give back to them?

Children ages birth to through age 18 are referred to CCP by pediatric oncology treatment centers at the time they are received every month – 48 in December alone. CCP responds immediately, arranging within 24 hours an in-person meeting with each family, providing emotional, logistical, and financial support so they know they are not alone on their terrifying journey. The support is comprehensive – whatever is necessary to ensure timely and complete access to care for the child, and it is continuous throughout the journey to age 21 since many children experience debilitating late-effects even after becoming cancer-free. CCP holds peer-support events throughout the year, connecting families to overcome their isolation, including a three-day residential Camp Victory each spring for the whole family and giant Christmas parties in Raleigh and Spartanburg.

What moments have impacted you the most?

Seeing cancer kids and their families come together at a CCP event, in all stages of treatment, some rejoicing at “ringing the bell” signifying the end of their treatment, some we’ll never see again, but all taking a day off from hospitals, needles and doctors to celebrate and encourage
one another. Hearing a single mom who’d never left the county tell how CCP prepared her to take her child on their first plane ride, arriving in New York City and finding their way to lifesaving treatment, navigating airports, taxis, bustling streets to their destination. Then doing it again and again … 21 times until her child was declared cancer-free. Somehow keeping her job, her apartment, and her courage. Learning that a group of Carolina children we have supported in a possible “second chance” clinical trial in New York after local treatments had failed, are doing well. All but one are now cancer-free and that remaining child is still undergoing treatment. Having one of their Moms declare that we saved her child because she could never have gotten him to distant treatments 21 times. Feeling their relief and sharing their tears. These children and caregivers are so brave – they deserve our very best.

What would you like to see accomplished for this year and in the future?

Greater awareness of the scope of cancer in children, the paucity of resources, the isolation and desperation of entire families clinging to one another, holding their breath for a doctor’s report, wondering how they will make it through. People think that with so much available to adults there must be amazing choices for children, but they are wrong – it’s the opposite of what they imagine. Seeing CCP’s Kidz in Lids® program spread across the Carolinas so healthy children can learn to help others less fortunate, so we can complete the safety net for our children against their #1 disease killer.

How can others get involved? Are there volunteer or donor opportunities?

Take a few minutes on the CCP website – www.childrenscancerpartners.org to learn about childhood cancer, and tell others what you learn. Sign up as a volunteer. Take Kidz in Lids® to your child’s or neighborhood school. Make a gift and imagine that first $100 represents the cost of getting a child across the state to their next critical treatment, knowing that even one missed treatment can render their entire program useless.

What is the most rewarding aspect of working with Children’s Cancer Partners?

Seeing all those faces and knowing any one of them might not make it through without our help. We don’t do research, and we don’t do treatment, but those are of no help to the child who can’t get there. We can’t save them all, but we can be sure every one of them gets timely and complete care, regardless of family circumstances.

Any other information you would like to include?

There is no organization like CCP anywhere in America, and right here in the Carolinas we are building a national model for childhood cancer patient and family support – one of which we can be so proud. Many good people provide “parts and pieces” of what we do, and we cherish them all, but no one responds so immediately, comprehensively and continuously.

Any upcoming events?

• Family Night Dinners near to treatment centers where families come together for peer support
• Docs Who Rock, Nov. 14, in Spartanburg, when musical docs and their bands perform fabulous rock and blues music to benefit our children.