In honor of National Cancer Survivors Day on June 7, check out this video where patients and staff at the Hyundai Cancer Institute at CHOC Children’s groove to Lady Antebellum’s “Compass” and show how they let their hearts be their compasses.
Kara Kipp has been a member of the Glass Slipper Guild for the past nine years. She and her husband Matt are the proud parents of three amazing boys, Bennett, Carter and Davis.
On April 17, 2009 their son Carter, seemingly healthy 22-month old was diagnosed with a rare form of liver cancer called hepatoblastoma. Less than 48 hours after being diagnosed, Carter was checked into CHOC Children’s and the oncology floor became their reality. Carter’s road map of action entailed four rounds of chemotherapy, then resection surgery and liver transplant, followed by two more rounds of chemotherapy. Carter did remarkably well from his transplant and after four weeks of recovery, went into CHOC for his final two rounds of chemo. Carter is now having follow-up scans and blood work done, and everything looks great for Carter. Carter has been cancer-free for four years.
The nurses and doctors at CHOC became the Kipps extended family, and Carter still considers them his closest friends. Not having an opportunity to interact with other kids his age, he thinks it’s perfectly normal to have so many doctors and nurses as his buddies.
The Kipp Family is forever grateful for CHOC and their leadership in making their son cancer-free.
I’m more than half way through my 50-week CHOC gratitude tour, and I just met two others who want to join me in thanking the hospital for our bright futures: Meet Amy and Emily.
Sisters Amy and Emily believe they have two birthdays: the days they were born, and the days they were diagnosed with cancer before beginning treatment at CHOC Children’s.
Each day is met with equal celebration. Amy and Emily, ages 29 and 18, see the anniversary or their diagnosis – their cancerversary – as the day they began the long road toward health.
“We think that’s the day of them starting to get better,” says their mother, Denise Justiniano. “We made that day a good memory. We eat dinner together as a family and make a fun time out of it.”
Both women received treatment as children at the Hyundai Cancer Institute at CHOC. Amy spent six months in the hospital after being diagnosed with lymphoma in 2001. Diagnosed with leukemia in 2008, Emily still receives treatment at CHOC’s outpatient infusion clinic.
And today both women are moving forward: Emily graduated from high school last June and is now in her second semester at college. About seven months ago, Amy gave birth to her second daughter.
“The nurses and doctors at CHOC are amazing,” Amy says. “Not only do they offer the best medical care, but they are empathetic and caring, and offer emotional support in a way that you would expect only a friend to. If it weren’t for CHOC, I wouldn’t be here today. They made a huge difference in my life and helped me become the person that I am today.”
Watching two children battle cancer was heart-wrenching, but Denise credits CHOC staff and fellow families and patients with helping to ease the experience.
“When we first arrived at CHOC with Amy, everyone came out of their room as we were coming down the hall,” she says. “They’re were talking to us, patting us on the back. It was like a warm hug.”
And their time at CHOC made an impression on more than Amy’s and Emily’s health: Amy is a nurse at a local hospital, and Emily is pursuing a career as a nurse practitioner.
“For us, it was the nurses who made CHOC home for us and made it manageable and joked with us,” Denise says.
And CHOC’s impression has extended further into the Justiniano family: Inspired by the CHOC child life staff who helped her sisters cope with hospitalization, a third daughter, Sarah, volunteers at CHOC and is pursuing a career in the child life department.
Imagine waiting for years to learn what is ailing your sick child, only to receive a diagnosis that you’ve never heard of. That’s often the plight of a parent of a child with a rare disease.
CHOC Children’s works to diagnose, treat and support patients and families with rare conditions. Here are some facts on rare diseases:
In the United States, a condition is considered “rare” it affects fewer than 200,000 persons.
If all people with rare diseases lived in one country, it would be the world’s third most populous country.
Approximately 50 percent of patients affected by rare diseases are children and 30 percent of these children will not live to see their fifth birthday.
95 percent of rare diseases have no Food and Drug Administration-approved drug treatment.
Many pediatric cancers make the list of rare diseases.
But despite these statistics, patients with rare diseases and their families are most certainly not alone – and there is hope.
In addition to finding support from CHOC, they can also lean on The Global Genes Project, an advocacy organization based in Aliso Viejo. The group helps parents and patients through their diagnostic odyssey and supports them through their rare disease treatment.
The best defense against the progression of rare disease is knowledge, support and medical facilities with a strong eye towards innovative technologies and treatments.
Parents often struggle with navigating how to raise a child with rare or genetic diseases. CHOC Children’s provides multiple channels of support including family-centered care, which empowers parents to become ...
THE DIFFERENCES BETWEEN ADULT AND CHILD CANCER CARE
“The pediatric cancer patient is never an individual, but is looked at in the context of the family,” says Dr. Sender, explaining the need for a family-centered treatment approach with young cancer patients. “Kids have siblings. They have parents. We try to understand that patient as a child, or teen, or young adult, but we also understand how they fit into their family and the family dynamics. In adult medicine, the family’s wishes are often secondary to the patient’s wishes. In pediatrics, they can be equal or overshadowed. A three-year-old can’t define what they want to do but with teens, we try to find the balance between the patient’s and the parent’s wishes.”
Pediatric cancer patients are classified in one of three major groups: young children, tweens/early teens and teens/young adults, says Dr. Sender. Developmental issues and stages of the child’s growth, including in utero before birth, are considered. “We think of adult cancers as the consequences of living your life. In childhood, it really is more about developmentally what is going on. Sometimes the cause is unknown,” says Dr. Sender.
CARE WITH COMFORT
Children with cancer are not just considered “little adults” in terms of care. “We want them to still be children,” says Dr. Sender. “We make sure that we provide an environment that is nurturing and comforting to the family. This is very stressful for these families. We are always thinking of that. We have a team-centered approach. We have oncologists, social workers, psychologists, child life experts and others all working to provide the young patient with as normal of a life as possible while they are being treated. CHOC is truly committed. It’s our passion. We want to deliver the most advanced treatment we can.”
DO TEENS AND YOUNG ADULTS HAVE UNIQUE ISSUES RELATED TO THEIR CANCER TREATMENT?
Adolescents and young adults into their late 30s who are being treated for cancer face a wide range of issues that need to be considered to help them cope. These issues include fertility preservation, the development of body image, career and education considerations, and dealing with an increased dependence on parents at a time when many in this age group strive to be more independent.
The incidence of childhood cancers (up to age 15) that are diagnosed as leukemia: 1/3
The number of pediatric cancer cases (up to age 15) diagnosed annually in the U.S.: 14,000
Dr. Sender is the medical director at the Hyundai Cancer Institute at CHOC Children’s and director of clinical operations and program development at the Chao Family Comprehensive Cancer Center at UC Irvine Medical Center. He also is a professor of medicine at UC Irvine. Dr. Sender completed his internship and residency in pediatrics at UC Irvine Medical Center and had a fellowship in pediatric hematology/oncology at Children’s Hospital in Los Angeles. Dr. Sender has twice been named a “Top Doctor” by U.S. News & World Report. He serves as board chairman of the “Stupid Cancer” Foundation and is a founding member and chairman of SeventyK.org, an adolescent cancer advocacy organization.
Dr. Sender’s philosophy of care: “I take a patient-centric approach and treat young patients as people, while understanding the context in which they get cancer. My goals are to cure the cancer and achieve a meaningful survivorship.”
Medical school at the University of the Witwatersrand in Johannesburg, South Africa