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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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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Protect Your Little Ones from Excessive Sun Exposure

Before Melanoma/Skin Cancer Detection and Prevention Month comes to a close, be sure to remind your kids and loved ones that excessive sun exposure and improper protection can increase the risk for skin cancer. Check out these tips to ward off those harmful UVA and UVB (ultraviolet radiation) rays:

For babies under 6 months —

  • Avoid sun exposure.
  • Dress infants in brimmed hats that protect the face and neck adequately, lightweight long pants and long-sleeved shirts.
  • When adequate clothing and shade are not available, parents can apply a minimal amount of sunscreen with at least 15 SPF (sun protection factor) to small areas, such as the infant’s face and the back of the hands.
  • Should an infant get sunburn, apply cool compresses to the affected area.

For all other children —

  • Stay in the shade whenever possible, and limit sun exposure during the peak hours – between 10 a.m. and 4 p.m.
  • Wear a hat with a three-inch brim, sunglasses (with 97-100% protection against both UVA and UVB rays), and clothing with a tight weave.
  • Apply enough sunscreen — about one ounce for each area of exposed skin, i.e. leg or arm. Be sure to reapply it every two hours, or after sweating or swimming.
  • Use extra caution near water as it reflects UV rays and may result in sunburn more quickly.

Learn more about melanoma – the most common and life-threatening form of skin cancer.

Download this CHOC sun safety tip sheet and post in your home.

 

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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.

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