How Dana-Farber Gave Our Family Hope

Ricardo Garcia’s son, Richi (left), and wife moved from Spain to seek treatment at Dana-Farber/Boston Children’s.

n late 2011, cancer changed our lives. My son Richi was diagnosed in Barcelona with a high-risk medulloblastoma, one of the most aggressive brain tumors. From that day on, we did not return home. We could never imagine what awaited us.

Richi endured eight operations. He entered the operating room three times so surgeons could try to remove the tumor, which had lodged in his cerebellum. Then came five more surgeries to implant and stabilize a shunt. Still, neurosurgeons were only able to extract 25 percent of the tumor. Then came six weeks of radiotherapy.

Unfortunately, Richi continued to get worse. We had little time and hope, but my wife and I would not give up. We searched online for the most advanced centers around the world specializing in the treatment of childhood brain tumors.

That was how we discovered Dana-Farber/Boston Children’s Hospital and Mark Kieran, MD, director of Pediatric Medical Neuro-Oncology. Kieran told us he and his team were convinced Richi still had options. All of a sudden, hope returned.

A week later, we landed in Boston. Meanwhile, our family and friends in Spain began a fundraising campaign to help finance the costs of treatment, as well as our stay in the U.S. Ultimately, all of this saved the life of our son.

Our medical team achieved its task. The neurosurgeon not only managed to

surgically remove the entire tumor, but also replaced the shunt. Richi endured additional surgeries and chemotherapy and successfully completed treatment in 2012. It was a miracle.

Now we live in Boston, close to the Institute and the people who gave us

back hope, saved Richi’s life, and still care for his health. We feel lucky. Richi is still with us as we continue to build our lives here.

I’ve spent all my life taking on challenges, but none as important

as the one that led me to move heaven and earth to save the life of my son.

Thank you to the thousands of people, many of them anonymous, who in one way or another have contributed to allowing Richi to remain with us. You have helped us and other children with cancer have the opportunity for a better prognosis and quality of life.

www.dana-farber.org

I“I’ve spent all my life taking on challenges, but none as important as the one that led me to move heaven and earth to save the life of my son.” – Ricardo Garcia

Side by SideA newsletter by and for patients and families Spring 2018

BY RICARDO GARCIA

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Psychosocial Care Helps with Cancer’s Mental Side

ART SPOTLIGHT: ‘Rising Crane’

Learn more about psychosocial oncology at www.dana-farber.org/palliative

E Cancer can feel like a slog — not just a physical one, but an emotional one, too. That’s how 56-year-old Amy Macdonald described her year-and-a-half of living with metastatic melanoma.

“The biggest life changes were the consequences of treatment – fatigue, body aches, brain fog, and mental issues,” she says. “I missed my vitality, curiosity, and humor. I couldn’t do nearly as much.”

Diagnosed in late 2015, Macdonald had surgery to remove a tumor that spread to her lymph nodes, followed by a clinical trial. One of the side effects of the trial drug was depression, so her oncologist prescribed an antidepressant. But when Macdonald began experiencing distressing side effects from the antidepressant – including obsessive counting and trouble concentrating – she was referred to Ilana Braun, MD, chief of Adult Psychosocial Oncology at Dana-Farber. Braun found a different drug to treat Macdonald’s side effects without causing additional problems, and addressed her treatment-induced depression through talk therapy.

“It was immediately easy to trust her,” Macdonald says. “I found I could do more with her than fix my medication issues. I could talk about life, relationships, work, and everything affected by cancer.”

Psychosocial oncology providers use talk therapy and medications to guide patients through treatment-related stresses, such as anxiety and depression.

“Some patients feel so caught up in their medical treatment that focusing on mental health can become an afterthought,” explains Braun. “But emotional health can be crucial to ensuring patients complete their treatment.”

Macdonald recently completed a year-long trial to reduce her risk of recurrence. While she still visits Dana-Farber for scans, she is getting back to doing the things she loves.

“I’m grateful that psychosocial help is available at Dana-Farber,” Macdonald says. “I don’t know if I would have made it through treatment without Ilana.”

lliot Offner, creator of the Rising Crane sculpture, was a printmaker, topographer, sculptor, and Andrew W. Mellon professor in Humanities at Smith College in Northampton, Mass. Captured in

bronze at the moment before the bird takes flight, the figure’s solid three-dimensional form, rich surface textures, and dynamic spirit bring it to life.

Offner, who died in 2010, identified familiar emotions, ranging from fear to hope to maternal love, in wildlife. Rising Crane expresses that sensitivity. Observe its spectacular form and exquisite pose suggesting ascent and the freedom of flight. Consider what creature might embody your own human emotions and how you might depict it.

Theories of line, critical patterns and form, and organization of design elements espoused by internationally acclaimed abstract artist and theorist Josef Albers provided Offner with principles he would invoke throughout his career. Rising Crane was donated by the artist and dedicated to Dana-Farber’s health care providers.

Dana-Farber is home to more than 500 works of art. To learn more about the Institute’s art collection, take an art tour and pick up a free audio guide at the Shapiro Center for Patients and Families (first floor of the Yawkey Center).

To learn more or take an online tour, visit www.dana-farber.org/audioarttour.

Rising Crane is located in the foyer of the Healing Garden on the second floor of Dana-Farber’s Yawkey Center.

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Empowering Patients with Music

guitar, speakers, and a laptop stocked with music composition software. It can be wheeled to patient rooms or patients can visit during scheduled drop-in sessions.

Woods will walk patients through the cart components before beginning a track on Garage Band, a music creation program. The patients often start by selecting loops – or repeated musical riffs – from a library of musical styles and instruments. After layering loops to create a song base, patients can add their own vocal track, piano lick, or guitar solo. For those with a higher level of music experience, the studio has all the technology needed to record and mix a professional composition.

3Spring 2018

hether it’s creating art, meditating, or chronicling their journeys in a blog, cancer patients find many creative ways to cope with their diagnosis and treatment. Music can also help patients express their physical and

emotional challenges, and a mobile recording studio at Dana-Farber is bringing music therapy to patients’ fingertips.

“The mobile music studio is a positive coping tool to help patients manage side effects of treatment like pain, stress, and anxiety,” says Heather Woods, MT-BC, music therapist and manager of Expressive Arts Therapies at Dana-Farber’s Leonard P. Zakim Center for Integrative Therapies and Healthy Living. “Research shows that offering coping skills through creative expression can support patients in feeling empowered, hopeful, and resilient,” Woods says. “It is something that medication alone can’t provide. Because of this, many patients find these interventions vital to their overall wellness.”

The mobile music cart is filled with studio essentials: headphones, microphones, an electric piano, a USB-compatible

Heather Woods shows off Dana-Farber’s mobile music studio.

WAll Dana-Farber patients and family members are

welcome to take advantage of classes and offerings at the Insttitute’s Leonard P. Zakim Center for Integrative Therapies and Healthy Living. The center offers classes, one-on-one consults, and educational programs aimed at helping improve overall health. It also offers integrative therapies designed to help patients ease symptoms and feel better during treatment.

Visit the Zakim Center web page to find a calendar of the latest seminars, classes, and programs.

www.dana-farber.org/zakim

Visit the Zakim Center

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Side by Side is dedicated to the memory of Geraldine “Geri” Hass Malter (1945–2002). Geri was a founding member of Dana-Farber’s Adult Patient and Family Advisory Council in 1998 and the visionary who created Side by Side. She managed its quarterly publication from 1999 until her death in 2002.

Editors: Jessica Cassidy, Eric SchullerDesign: John DiGianni

Tips for Talking with Your Care Team

PFACs Help Improvethe Patient Experience

ne of the most important parts of cancer

treatment involves talking with your cancer

care team. You want to be able to openly discuss

different aspects of your health, treatment, and symptoms

you might be experiencing. To make the most of

conversations with your care team:

Think about questions you have before your appointment. Write them down in a list and bring it to your visit. You may want to practice asking difficult questions or discussing sensitive topics with a friend or loved one beforehand. This may be helpful if you find them hard to remember or bring up in the moment.

Talk about what is on your mind. Your doctors and nurses know a lot about your disease, but you know a lot about your own body. Share your fears and concerns, and ask questions. Ask your care team to suggest the best reading materials or websites with more information about your cancer.

Take notes. Ask your doctor if it’s okay to record conversations using a smartphone, tablet device, or digital voice recorder, so you can listen to your conversation again at home or share with your family.

Speak up if you don’t understand something. Ask that something be explained again if you don’t understand. Ask your care team about the best phone numbers to call when you have questions about how you’re feeling or any symptoms you might experience away from the hospital.

Keep track of your symptoms and concerns. Between appointments, use a notebook or your smartphone to keep a list of symptoms that you’ve had or questions that come up. Share this list with your care team at your next appointment.

Learn MoreFor more tips on talking with members of your care team-visit www.dana-farber.org and enter “talking with your doctor” in the search box.

Dana-Farber’s Patient and Family Advisory Councils (PFACs) include patients, family members, and staff who come together to help improve the patient experience and ensure patient- and family centered care. There are separate councils for adult care and pediatric care, but both councils share the same core values and mission:

• Offer a patient and family voice in Dana-Farber decisions and projects.

• Help share information and implement services that affect patients and their families.

• Initiate ideas for policies, programs, projects, and services within the patient care environment.

• Support patients and their families in becoming informed advocates for their own care.

• Provide ongoing opportunities to hear the voices, experiences, and perspectives of patients and

If you’re interested in helping improve and enhance patient care at Dana-Farber, consider joining the Adult or Pediatric PFAC. The councils welcome new ideas and members, and their efforts are vital to the Institute.

O

Learn more Visit www.dana-farber.org/PFAC.

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