Looking beyond traditional medicine

Guest blogger, Audra Wilford, proud mom of CHOC Children’s patient, “SuperMax,” and founder of MaxLove Project – a community organization dedicated to helping childhood cancer families beat the odds – shares how her son has benefitted from CHOC’s integrative health services.

Max with Ruth McCarty, director of CHOC's Integrative Medicine Program
Max Wilford with Ruth McCarty, L.Ac.

A few years ago, our son Max was diagnosed with brain cancer. After a difficult brain surgery, where only a portion of the tumor could be removed, and almost a month in the hospital, we faced the biggest challenges of our lives. After the surgery, Max lost his ability to walk, talk and use the left side of his body. He was going to need an unknown amount of chemotherapy and radiation to try to shrink the tumor left in his brain. We knew we were going to need an all-hands-on-deck approach for fighting the cancer and for restoring Max to health.

What we didn’t realize at the time was how many hands we’d need – it takes a whole multi-disciplinary team. But what happens when we leave the hospital? Who helps with nagging side effects, lingering stress, optimal nutrition, strengthening exercises and healthy sleep?

For us, it started with one amazing CHOC practitioner: Ruth McCarty. Ruth is the country’s only traditional Chinese medicine specialist at a children’s hospital who is fully integrated into every medical team in the hospital. When we first met with her, she put us at ease immediately. As we told her about Max’s neuropathy, sleep problems, headaches, gut challenges, anxiety, balance problems, muscle pain, immune suppression, and so on, she smiled and told us not only what she could do with acupuncture and moxibustion – a Chinese medicine technique that involves the burning of mugwort, a small spongy herb, to facilitate healing – but also what we could do at home through massage and select supplementation.

Over the next few months we saw Ruth every week, twice per week during chemotherapy. Max’s strength, range of movement, mood, pain, gut challenges, headaches, and sleep improved every week. And on the rare week when we had to miss appointments with Ruth, we would notice symptoms returning.  During this time we also got to know Dr. Agnes Horvath, a CHOC oncologist who made the rounds in the outpatient infusion center. Dr. Horvath introduced us to bone broth and other healing foods that helped Max thrive through treatment. She encouraged us to think about nutrition as a key component of Max’s treatment. With her help, we continued to transform Max’s diet into what we came to call “fierce foods”: lots of whole foods, limited sugar and processed foods, and a ton of flavor. Max finished treatment in January 2013 and finished up kindergarten just a few months later.

By June 2013, Max’s tumor began growing again. By then, we had become immersed in the latest research on nutrition and cancer, and we wanted to try an intensive therapeutic diet for Max alongside whatever conventional therapies that our oncologist, Dr. Violet Shen, recommended. Dr. Shen took the time to research the diet and gave us her full support. She carefully guided us as we incorporated a therapeutic diet into Max’s treatment protocol.

Today, Max’s tumor continues to shrink and he’s a healthy, happy third grader. Each step of the way, CHOC has supported our family in incorporating the best and latest evidence-based medicine, whether it’s in acupuncture, massage therapy, stress control or diet. The doctors, nurses and therapists at CHOC understand that complementary and integrative medicine is about optimum quality of life, using the best of all therapeutic approaches to support each child and family to thrive in the face of tough odds.

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Innovative Cancer Treatment: Abbey’s Story

Abbey and Jaime Serna, phlebotomist at CHOC Children's hospital.
Abbey Schemmer and Jaime Serna, phlebotomist at CHOC Children’s Hospital.

While many teenaged girls might balk at wearing a medical device on their shaved heads 18 hours a day, Abbey Schemmer didn’t blink an eye.

After all, the 16-year-old CHOC Children’s patient was fighting for her life.

Following the diagnosis of two brain tumors – including a rare, extremely aggressive type called glioblastoma multiforme – and several surgeries, Abbey and her family turned to a new technique to halt the tumors’ growth: tumor treating fields, or TTF.

TTF uses electromagnetic forces to prevent this type of tumor from dividing and growing. TTF was only recently approved for adult use, and as a pediatric patient, Abbey received special clearance to use ahelmet-like device that administers the treatment.

Worn continuously for 18 hours a day, the helmet places electrodes directly on Abbey’s scalp, which requires her to shave her head every few days so that the helmet’s electrodes directly touch her skin. Abbey wears the device’s power source in a backpack.

“This is not an easy treatment,” said Dr. Violet Shen, Abbey’s oncologist at CHOC. “But she was willing to do that and is wearing her helmet and head dressings and still going on with her life.”

Following about nine months of TTF treatment and chemotherapy, Abbey’s tumor shows no signs of major progression, Dr. Shen said.

The progress is a marked departure from expectations when Abbey was diagnosed in early 2013 following complaints of nausea, headaches and lethargy.

“We thought we had a sick little girl,” said Ken, Abbey’s father. “We were thinking she wouldn’t live for very long.”

Abbey immediately underwent surgery to remove the tumor, followed by chemotherapy and radiation. She stayed in good spirits and continued with school, but after she experienced seizures in summer 2014, it was clear the glioblastoma had grown back.

After another surgery to remove Abbey’s right frontal lobe, the family explored other methods to curb the tumor’s growth, and ultimately turned to TTF.

“It was cool that it could help my cancer,” Abbey said.

In the months following, Abbey has continued in school and she’s looking forward to beginning driver’s education. Her schoolmates have rallied around her, and taken an interest in her unique treatment, Abbey said. “People ask me questions,” she said. “They think it’s fun because my backpack generates heat. They ask, ‘Can I see your heater?’”

If this treatment continues to work, Abbey could feasibly continue to wear the helmet for the rest of her life, Ken says. For now, her family is taking the treatment one day at a time.

“It’s been working,” Dr. Shen said. “Very few people survive with this tumor for six months, let alone a year. Abby’s done well. She’s very vigorous and still attending school. Abbey’s definitely a fighter.”

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Celebrate National Cancer Survivors Day

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.

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  • Innovative Cancer Treatment: Abbey’s Story
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Bringing Together the Best Minds in Pediatric Cancer Care

CHOC Children’s is taking the concepts of second-opinion consultation and tumor board planning at least six steps further. The Virtual Pediatric Network (VPN) uses state-of-the-art video conferencing to allow pediatric cancer experts from six leading institutions to share best practices, research and expertise as if they were all in the same room.

“No one institution can be an expert in every cancer, but with the VPN, these hospitals can work together to bring the best care to patients wherever they may live,” said Dr. Leonard Sender, medical director, Hyundai Cancer Institute at CHOC.

Described as a “multidisciplinary second opinion,” the tumor board concept has become an important cancer-fighting resource at hospitals in recent years. Tumor board meetings typically involve staff from across medical, nursing, psychological and rehabilitative disciplines who evaluate, diagnose and plan treatment for individual patients.

In a similar fashion, the VPN is comprised of five medical centers and one research institute for genomic medicine: CHOC, Lucile Packard Children’s Hospital at Stanford, Kapi’olani Medical Center for Women & Children, Duke Children’s Hospital & Health Center, Rady Children’s Hospital-San Diego and the Translational Genomics Research Institute. With CHOC serving as the hub, all are connected through the CISCO TelePresence video conferencing system, a secure network made available by a grant from CISCO to the CHOC Children’s Foundation.

According to Dr. Sender, the TelePresence system offers the highest level of video conferencing technology available. Optimized for exceptional sound and picture quality, the system captures every expression, gesture and voice inflection, creating a collaborative environment that leads to deeper discussion, enhanced information sharing and improved decision making.

“The VPN is an opportunity to leverage technology to allow for greater collaboration and, hopefully, innovation between children’s hospitals and cancer programs,” Dr. Sender said. “This will lead to potentially better science and provide pediatric patients the greatest opportunities for survival and quality of life.”

The VPN has the potential to standardize and improve care for pediatric patients throughout the world, Dr. Sender added. CHOC and CISCO are already planning to expand the network to additional locations and specialties, including pediatric institutions in Australia and the United Kingdom.

Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Treating the Teen Cancer Patient

crop_girlPHYSICAL CHANGES
The teen years are a time when adolescents develop their self-image, seek autonomy or independence from their parents, and deal with issues of emerging sexuality, Dr. Sender says. Keeping that in mind with young cancer patients, he explains, “We try to understand and not downplay the issues of self-esteem and body image. We make sure we are talking to the patients and not just their parents. No one likes to lose his or her hair, for instance. For a young girl who is 13, 14 or 15, we realize this can be quite catastrophic.”

EMOTIONAL AND SPIRITUAL CONCERNS
“A teen’s peers are really important too, so we try to keep them involved. Peer support helps,” says Dr. Sender.  “We have social workers and nurses that talk to the patients. We try to make sure we are listening to them. We’ve taken them out of their normal routine, their school and peer relationships, and they lose control.” Patients may also enlist support from a religious leader of their chosen faith if they would like. “We respect all religions and people’s faith and how they cope,” Dr. Sender says.

TEEN CANCER PATIENTS ARE UNIQUE
Social and peer acceptance; career and education considerations; and the desire for independence are among issues to be considered when helping the adolescent cancer patient. It’s important for everyone involved in the patient’s care to consider these factors to better understand how the teen will respond to therapy, the hospital and possibly being in a clinical trial, says Dr. Sender, who noted that fewer teens and young adults nationwide participate in pediatric clinical trials compared to younger children. To help better connect teen cancer patients with their school and peers, CHOC is participating in a research project with UC Irvine that will place a robot in an Orange County
classroom — connected to a CHOC patient by a computer — so the patient can interact with classmates and have an improved sense of normalcy. Dr. Sender says researchers hope to learn whether the robot keeps the patient better engaged with peers at school.

FAST FACTS

  • Estimated number of cancer deaths that will occur this year in children from birth – 19: 1,960
  • Estimated number of new cancer cases that will be diagnosed this year in the U.S. in children ages birth-19: 15,780
  • Percentage of overall 5-year survival rate for childhood cancers: 80%

View the full feature on Teen Cancer Patients

Dr. Boon
Dr. Leonard Sender
CHOC Oncologist

PHYSICIAN FOCUS: DR. LEONARD SENDER

Dr. Sender is the medical director of 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. 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 Los Angeles. Dr. Sender 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 a person while understanding the context in which they get cancer. My goals are to cure the cancer and achieve a meaningful survivorship.”

EDUCATION:
Medical school at the University of the Witwatersrand in Johannesburg, South Africa

BOARD CERTIFICATIONS:
Pediatric hematology/oncology Pediatrics

More about Dr. Sender

This article was featured in the Orange County Register on June 9, 2014, and was written by Amy Bentley.

Preserving Fertility in Adolescent Cancer Patients

When treating children and teenPreserving_Fertilitys with cancer at CHOC, physicians also have another health aspect in mind: patients’ future fertility.

Because so many adolescent cancer patients are surviving into adulthood, physicians, patients and their families have a major interest in preserving a patient’s fertility, as well as the long-term effects that treatment can have on a patient’s fertility in the future, says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s.

“If we accept at CHOC that 80 percent of children and young adults are going to be cured or survive long-term, working on survivorship starts from day one,” he says. “This means we address the types of drugs we use, the therapies we use, and their long-term consequences.”

According to the National Cancer Institute, the most frequent cause of impaired fertility in male cancer survivors is chemotherapy or radiation-induced damage to sperm. For girls and young women, cancer treatment may damage immature eggs, affect the body’s hormonal balance, or harm the reproductive organs.

“We need to ask, ‘What are we doing to preserve fertility?’” Dr. Sender says.

Options for preserving fertility depend on many factors, including the patient’s gender, age, type of cancer and type of treatment. Among the ways to preserve fertility are freezing and banking sperm for the males, and freezing and banking eggs for females.

“We also do ovarian cryopreservation,” Dr. Sender says. “CHOC is one of the few institutions offering this option. These procedures may Preserving_Fertility_2have to be done before or during cancer treatment, and patients who have just received their diagnosis might only have a small window of time to decide what to do.”

CHOC is a member of the National Physicians Cooperative (NPC) of the Oncofertility Consortium, which supports cancer patients and survivors whose medical treatments may risk infertility, and offers tips for adolescent patients to consider on the topics of preserving fertility and parenting.

With input from their parents and other loved ones, young cancer patients facing this issue can ask themselves:

  • Do I want to have children? If so, how many?
  • Would I prefer adoption to other parenthood options?
  • Does it matter to me if my children are biologically related to me?
  • Am I open to using donor sperm or donor embryos?
  • Do I have ethical or religious concerns about assisted reproductive technologies?

Questions adolescent and young adult cancer patients can ask their doctor may include:

  •  Will my treatment affect my fertility?
  • Are there alternative ways to treat my cancer without compromising my fertility?
  •  What are my fertility preservation options?
  •  How much time do I have to preserve my fertility before I need to start treatment?
  • How will I know if I am fertile following treatment? Are there tests I can take?
  • What are the risks to my children based on my cancer and the treatment I received?
  • For girls and young women: Is pregnancy safe for me after treatment?

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A Bright Future: Amy’s and Emily’s story

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 IMAGE_2have 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.

 

Oncology: Then and Now

Much has changed in oncology the last 50 years. In the 1960s, childhood cancer survival rates were less than 20 percent. Today, survival rates near 80 percent, according to the National Cancer       Insti20130423_0071tute.

Isn’t that astounding? It’s been amazing to watch the changes in cancer diagnosis, treatment and knowledge since the time I first visited CHOC in 1964.

Today, the Hyundai Cancer Institute at CHOC Children’s provides personalized pediatric cancer treatment by nationally recognized specialists. Physicians and staff treat not just the child’s cancer, but her whole needs: emotional, spiritual and physical. CHOC believes that children should still get to feel like kids, even when dealing with a grown-up issue like cancer.

Because many patients battling cancer spend a long time in the hospital, I’ve gotten to know many through the years. Like all CHOC patients, they are brave and courageous. They inspire me, and I’m thankful every day for them and the doctors who provide their care.

Send them your best wishes in the comments section or on social media by using the hashtag #thxCHOC.

_______________________________________________________________________________________________________________________

The Hyundai Cancer Institute at CHOC Children’s believes in a team approach to providing treatment to patients that includes a multidisciplinary team of physicians and specialists and the patient’s family. A cancer diagnosis touches the lives of the entire family, and that’s why the Cancer Institute is dedicated to a family-centered approach to care that includes immediately pairing patients and their families with a pediatric oncology nurse coordinator who serves as an advocate for the child and family throughout the patient’s course of treatment.

 

Helping Adolescents and Young Adults Cope with Cancer

girlwithcancerThere’s never a good time for a cancer diagnosis, but the teen and young adult years can be an especially tough time for cancer patients. Adolescents and young adults into their 30s who are being treated for cancer face a wide range of issues special to their age group 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.

“Teens are starting to enter adulthood and move away from parents. They are starting to become more of an individual. In the normal struggle between the teenager and their parents, you throw cancer into the mix and you create tremendous stress. This is a time when they want to be independent but they are sick,” explains Dr. Leonard Sender, director of the Hyundai Cancer Institute at CHOC Children’s and specializes in the unique issues relating to cancer treatment in adolescents and young adults from the ages of 15 to 39.

For several years, Dr. Sender has served as an advocate for this very special group of patients through the SeventyK that he co-founded in 2008 and currently chairs. Dr. Sender is especially sensitive to the psychosocial impacts of a cancer diagnosis on those just beginning to enter their most productive years. He remains a vocal advocate for this group, working to make sure they receive age-appropriate medical treatment and support, including, psychosocial, community and palliative services. In 2010, Dr. Sender founded two entities critical to the development of the emerging adolescent and young adult oncology subspecialty as president of the Society for Adolescent and Young Adult Oncology (SAYAO) and editor-in-chief of the Journal of Adolescent and Young Adult Oncology (JAYAO).

According to SeventyK, adolescents and young adults with cancer have often been described as a medically underserved population, falling through the gap between pediatric and adult oncology. As they transition from childhood to adulthood, the normal issues people in this age group face are compounded when they are diagnosed with cancer.

These patients may face treatment-related issues such as infertility; the loss of a job or breaks in education due to treatment; increased dependence on parents; and other health concerns, all of which can be exceptionally difficult for this group to cope with. Fertility preservation, in particular, has long been overlooked for adolescents, especially considering the fact that many young men and women haven’t yet started to think about having children. Adolescent and young adult patients may need extra support or psychological help to cope.

“Our goal is to cure these kids,” says Dr. Sender. “We bring in the best science, the best clinical delivery of care that we can. We always take into account the developmental stage of these patients. We never lose sight of the fact that these patients undergo tremendous amounts of interventions that can physically and emotionally scar them. We try to think about them as survivors from day one.”

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Gift Puts Genomic Research into High Gear

annual-report-2013-genomic-researchFor more than a decade, the cure rate for pediatric cancer has been stalled at about 80 percent. A multidisciplinary team of specialists at the Hyundai Cancer Institute at CHOC Children’s is working to find cures for the other 20 percent—and won’t stop until they do.

Thanks to a gift in 2011 of $10 million from Hyundai Motor America, the largest corporate gift in CHOC’s history, Leonard Sender, M.D., medical director of the Cancer Institute, and his team are conducting cutting-edge genomic research to better understand cancers that occur in children and teenagers.

Whole genome (DNA) sequencing of both tumors and healthy tissue and transcriptome (RNA) sequencing of tumors is being conducted to identify the molecular profile of cancers occurring in patients, according to Dr. Sender. The goal is to identify genetic mutations that may be responsible for a child’s cancer, and to determine how cancer cells differ from cells that have mutated but are noncancerous.

Once whole genome and transcriptome sequencing procedures are performed, the data is analyzed by oncologists, cancer epidemiologists, cancer biologists and bioinformaticists. Their aim is to identify treatments and available medications that may be beneficial for the patient based on the molecular profile of the cancer.

“Even if we are unable to identify a treatment that is available now, the information learned may be used to help us better understand what causes cancer and how it may be treated or prevented in the future,” Dr. Sender said.

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