CHOC Children’s Joins National Cancer Consortium

The Hyundai Cancer Institute at CHOC Children’s took yet another bold step in its fight against pediatric cancer by uniting with Cancer Moonshot 2020.  CHOC is one of 10 founding members of a national pediatrics consortium announced at a press conference on Feb. 18, 2016, and dedicated to accelerating cancer cures through immunotherapy.  All partners will seek to apply the most comprehensive cancer molecular diagnostic testing available, and leverage proven and promising combination immunotherapies and clinical trials. Real time data sharing is designed to accelerate clinical learning for all consortium members.

“The Pediatric Cancer Moonshot 2020 will attempt to cure all the numerous types of pediatric cancer with the least toxicity by harnessing patients’ own immune systems and using the tumors’ unique genomic mutations to create individualized cancer vaccines,” explains Dr. Leonard Sender, medical director, Hyundai Cancer Institute.

Dr. Sender has positioned CHOC a leader in the field of innovative genomic medicine techniques. In addition to being designated a Caris Center of Excellence for its commitment to precision medicine, CHOC is a participant in the California Kids Cancer Comparison, bringing the benefit of big data bioinformatics to its patients. And, CHOC recently enrolled its first patient in a multi-center clinical study for the treatment of relapsed or refractory acute lymphoblastic leukemia (ALL) with investigational immunotherapy.

“CHOC has studied whole genome sequencing for several years, and our team recognizes its value to clinical decision making. Now, with the availability of the next generation of molecular diagnostics, we are excited by the acceleration of knowledge that this system will provide and are honored to be a founding member of such an important initiative,” says Dr. Sender.

20140916_2770 Three major drivers of the Cancer Moonshot 2020 Pediatrics Consortium are:

  1. The recognition that cancer is caused by any one of a multiple number of genetic mutations, with thousands of molecular alterations presenting within each pediatric cancer patient. Consortium members and their patients will benefit from the most comprehensive molecular diagnosis in the market today.
  2. The significant fragmentation across the healthcare ecosystem. More specifically, pharmaceutical drug development often occurs in silos with limited ability to share clinical information. Consortium members recognize that collaboration across medical and scientific communities will help remove barriers to accelerated progress in the war on pediatric cancer.
  3. The lack of a comprehensive data sharing system, including participation by pharmaceutical companies, for individual children cancer centers. Consortium members will have access to Cancer Moonshot 2020’s national, robust and scaled cloud infrastructure enabling the ability to share data in real time and provide access to breakthrough knowledge.

In addition to CHOC, founding members of the Cancer Moonshot 2020 Pediatrics Consortium are:

  • Ann & Robert H. Lurie Children’s Hospital
  • Children’s Healthcare of Atlanta
  • Children’s Hospital of Philadelphia
  • Children’s Hospital of Pittsburgh of UPMC
  • Duke Department of Pediatrics at Duke University School of Medicine
  • Floating Hospital for Children at Tufts Medical Center
  • Huntsman Cancer Institute at the University of Utah and Intermountain Primary Children’s Hospital
  • Phoenix Children’s Hospital
  • Sanford Health

How Parents Can Help Teens Manage Their Health Care

When it comes to health care matters, parents of teenagers must strike a delicate balance, especially when the teen is old or mature enough to make his own decisions.

Parents can help teens learn about their illness and decide what’s best for themselves – without overpowering their children, says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s and chairman of SeventyK.org, an adolescent cancer advocacy organization.

“The parent’s role in a teen’s health care should not to be to take over the child, but to encourage the young person to take ownership of this new reality,” Dr. Sender says.

Begin with honest conversations about the teen’s plans to manage his health, he recommends.

“Let the child come up with a solution to their problem,” Dr. Sender says. “It’s about respecting the teen’s emerging autonomy. You don’t want to have a hovering parent make every decision for the child.”

When confronted by a disagreement with a teen over a health care decision, parents should be patient, Dr. Sender advises.

“You have to go back and re-educate them,” he says. “Calm down. Don’t say things you are going to regret. If they disagree, it doesn’t mean they are wrong. Explain things to them again.”

Dr. Sender offered some tips for parents of teens with a serious or chronic medical condition:

  • Actively include the teen in meetings with doctors and health care providers managing his or her care. Make sure everyone addresses the teen directly and doesn’t treat him like a third party.
  • Don’t keep secrets or hide information from your teen, and never lie about their situation.
  • Help the teen act in his best interest and let him know he may fail.
  • Help your teen maintain peer relationships, including through social media.
  • Be prepared to have helpful discussions about sexuality if necessary.

For teens who are hospitalized, CHOC works to create a positive environment for patients and their families. These amenities include a teen room, family lounge, family consultation rooms, a meditation center and the Family Resource Center, which is stocked with educational resources including Internet access, books and pamphlets.

To learn more about the role of teens in their health care, go to choc.org/health.

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World’s First “Infusionarium” Comes to CHOC Children’s

Any parent who’s ever tried to get the attention of a child engrossed in a video game or NEW20140915_0307movie can certainly appreciate the concept. Our new, multi-screen “Infusionarium” is an innovative video experience offering a welcome distraction for young patients undergoing treatments that often last for hours.

The CHOC Children’s Infusionarium is the first program of its kind to combine immersive video technology with life-saving infusion therapy, such as chemotherapy or IV antibiotics. Located inside The Dhont Family Foundation Outpatient Infusion Center (OPI) at CHOC Children’s, the jumbo screens and fabric-draped interior look more like a deluxe home theater than a hospital treatment room.

Each patient chair is equipped with a laptop, headphones and wireless keyboard. Up to four patients, age 2 or older, may play at a time, together across four screens or individually. Patients may choose from an extensive menu of video options:

  • Watch popular movies
  • Play favorite Xbox video games
  • Skype with friends
  • Take “live” virtual tours, including the NASA Jet Propulsion Laboratory and Monterey Bay Aquarium
  • Surf the Internet, watch YouTube videos
  • Check email
  • Listen to music or podcasts using high-end, noise-canceling headphones

Parents may also use the Infusionarium to watch educational videos.

Therapy for Chemotherapy

The soothing space and mental distraction may help reduce the physical side effects of chemotherapy.

“One patient used to dread coming in for treatments due to intense bouts of nausea that required multiple medications,” said Leonard Sender, M.D. medical director of the Hyundai Cancer Institute at CHOC Children’s. “Today, when he undergoes treatment within the Infusionarium, he doesn’t even use anti-nausea medications.” Plans are underway to formally evaluate all possible patient benefits.

The Infusionarium was developed for CHOC by My Bridge 4 Life, a company that uses emerging technologies and digital media to create “immersive healing environments.” Founders Roger Holzberg and Allison Mills collaborated with Dr. Sender to launch a “pop-up” pilot Infusionarium at CHOC last summer. The results were so encouraging that CHOC moved forward with the new pod inside the OPI. Funding was made possible by proceeds from the Hyundai Hope on Wheels 5K Run/Walk.

Read more in The New York Times.

Learn more about the innovative programs taking place at the Hyundai Cancer Institute at CHOC Children’s.

Related articles:

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?

 More articles about adolescents and young adults with cancer:

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