What is Nancy’s Club?

“When we are with Nancy’s Club kids,

gratitude takes a front seat and human connection is the only thing that absolutely matters.

I love Nancy’s Club. The Club has saved Ivy’s spirit and probably her life.”

…. Suzanne, mom of 7-year-old Ivy, a survivor of childhood leukemia

and member of Nancy’s Club

 

Nancy’s Club, a program of Nancy’s List, is for children and teens whose lives have been touched by cancer, be it their own diagnosis or that of someone they love. We exist with the goal that no child or teen will ever go through cancer alone.   We create magical adventures for these kids, their siblings, friends, and loved ones so they get a break from the daunting world of living with cancer. The Club offers these youngsters a sense of ‘belonging’ to a community with other youth who share their challenges. They listen generously to one another, offer support, find hope, strength, healing, fascination, empowerment (“WOW! I can DO this!”), friendship AND they always share laughter and fun. From one Nancy’s Club member,

“I don’t want to go to a shrink and I am not into any support group  not cool.

But a Club with kids just like me . that is way way cool.”

I would like to introduce Harry, one of the many children of courage … the shining stars.

Harry

Harry, 3 years old

Harry was diagnosed with acute myelogenous leukemia, or AML, at 6 months of age.

Katie, his mom, said, “Knowing your child has cancer is bad enough. Then finding out it’s a rare type, then an aggressive type. Then learning it has spread into his cerebrospinal fluid, he has a 50/50 chance of survival, and the treatment you’re about to put him through is very toxic. It was devastating news.”  

After five weeks at the hospital, Harry finished his first round of chemotherapy. Two days later, the Drakes learned that, although the cancer in Harry’s blood was in remission, cancer cells remained in his spinal fluid. He was classified as a ‘relapse’. His chances of survival decreased to 20 percent. The only way he might make it was a bone marrow transplant.

When Harry was nearly 8 months old, he underwent that procedure. His donor was an unrelated 25-year-old German miller who chops wood and raises sheep and goats for a living. A true hero indeed.

Chemotherapy targets rapidly dividing cancer cells. Because the cells in the hair, mouth, and intestinal tract also divide quickly, chemotherapy tends to kill them as well. The result can be hair loss, stomach sensitivity, and mouth sores (mucositis). Harry suffered from the latter while receiving his second round of chemotherapy. He was on so much pain medication that he lived in a deep sleep for his entire eighth month.

Harry has spent most of his young life in the hospital. He missed the Christmas trees and the birthday parties in his early childhood, living with a feeding tube for so many years, which restricted his playtime. He was denied so many childhood pleasures of running after a ball, climbing a tree, jumping on the trampoline … always needing to be careful.

When Harry was 3, he and his family came to Nancy’s Club for a sailing outing. We thought he was too young to sail.  He was to stay on the beach with his mom, Katie, while his 6-year-old brother Jack and his dad Julian would sail with us. Harry took one look at the boat, heard the plan, and expressed his desperate wish to join the sailing group. I was heading up the outing. I listened to Harry. His fierce tenacity, his bravery, his determination were so powerful. His parents felt it would be wonderful for him. I asked the crew to rig up a life jacket for this little strong, brave superman and off Harry sailed. When Diane, our volunteer captain who invited us to sail on her boat, positioned him behind the wheel, Harry felt his courage. He looked straight into my eyes and said,

“Today is the happiest day of my life.”

Katie, Harry’s mom, said to me, “What an uplifting, wonderful experience for our family after 3 years of anguish.”

This is the reason for Nancy’s Club.

This is why we are needed and must continue our work.

For children like Harry.

 

The story of Nancy’s Club 

I am  a clinical psychologist, specializing in family dynamics. I counsel many youngsters and their families and witness the immensely powerful trauma that cancer brings to those living with the disease. Children speak the truth.

Susie, a 12-year-old girl, who had been adopted from Tijuana by California parents, lost her father to cancer and was terribly worried that her mother was now battling cancer. She asked me,

“If my mom dies, will I be an orphan again and get sent back to Mexico?”  

Johnny, another 12-year-old, told me,

“My mom is sick again with cancer for the 3rd time and my dad is drinking like a fish.

I am afraid they are both going to die.

Help me find a way to make him stop!”  

I launched a program to give these children and their families a break, to find ways to have fun and share joy with loved ones that would stay in their hearts forever more. Reaching out to the children and teens opened the opportunity to touch the entire family.

Sailing became the most wonderful vehicle and the metaphor. Through lasting partnerships with local sailors and organizations volunteering countless hours, we have introduced many many children and their families to the healing power of the sea. They have the opportunity to build self-esteem, bravery, determination, strengthen their spirits, and provide fun and joy to a child who has so little. They also fall in love with the healing power of the water.

Most children who sail with us have leukemia or brain cancer. Pediatric leukemia treatment is a long process, often over three years, with many hospitalizations and complications.

Without these adventures with Nancy’s Club, many children have nothing to look forward to, no days of fun to hold onto for hope.  

 

Why We Do It

Despite remarkable advances in cancer treatment for children, cancer kills more children than any other disease. According to a 2006 report issued by the California Cancer Registry, more than 1,500 children and youth under the age of 20 are diagnosed with cancer each year in California. Of these, over 1,100 are under the age of 15. An estimated one of every 340 children will develop some form of cancer before he or she is 20 years old.

The American Cancer Society approximates more than 367,000 patients with children under 18 will be diagnosed with invasive cancer each year in the United States. The Children’s Treehouse Foundation reports,

“One in four parents in America is diagnosed with cancer each year.”  

This disease permanently changes the family dynamics, evoking in the children fears, doubts, and questions about their future and that of their parents. The Handbook of Psychology, Oxford University Press, 1989, reported that these youngsters are a “hidden, high-risk group whose problems are minimized by overwhelmed parents and are unknown to the medical staff who seldom see them.”

These young people are oftentimes left out of the “family conversation” when cancer strikes a family member. The trauma they endure may lead to emotional difficulties throughout life, including low self-esteem, poor mental health, eating disorders, depression and anxiety, post-traumatic stress disorder. They need our emotional support.  

Many teens slip into a lonely land. Because they are a relatively small group, the difficulty of finding peer support forces many to deal in isolation with issues specific to this age and stage of life: dating, disclosure to a potential employer, having to quit school, feeling lost.   Research from St. Jude Children’s Research Hospital and other pediatric oncology institutions supports a growing body of evidence that children’s adaptive style in the face of life-altering trauma can be advanced by targeted psychological therapeutic care, support groups, family bonding experiences, and new friends through broadened horizons.

This is the purpose of Nancy’s Club.

 

Since the initiation of Nancy’s Club, we have …

  • Created a community action movement with nearly 5,000 active participants. We elicited the passion of many volunteers … individuals, businesses, healthcare professionals, medical institutions, cancer organizations, all donating their time, services, and venues to support our cancer community, particularly the children.

 

  • Established the Nancy’s Club section of our website with local and national cancer resources, parent support information, medication assistance programs, advocacy, financial resources, information for various diagnoses, and invitations to adventures and events sponsored by Nancy’s Club.

 

  • Presented community forums for parents with experts in the field of family dynamics and pediatric cancer challenges, giving guidance about talking to their children about their own diagnosis or that of a loved one, the changing role of the siblings, and more. Attendees report that greatly needed support and friendship develop for the parents and caregivers at these gatherings.

 

  • Offered pro bono counseling for the youngsters living with cancer, their siblings, and parents, either on an
individual basis or, most often, for the entire family.

 

With immense love and appreciation for all the young ones who are touched by cancer …..

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