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JacoB's Heart cHilDren's cancer support services: tHey Help teens anD tweens too! i t has come full circle for Mariela Medina. As a teenager battling cancer, she came to Jacob's Heart Children's Cancer Support Services for support. Now, cancer- free and a Jacob's Heart staff member, Mariela is a lifeline for teens going through challenges she vividly remembers. "When I started working for Jacob's Heart, I did not think I could offer much support, but in the five years I have been here, I have realized that all the pain I endured was not in vain," she says. "I see myself through many of my teens, I feel them so deeply because I understand how they feel." Mariela works as the Family Support Specialist focused on teens, providing assistance and mentorship to teens with cancer and organizing activities including field trips. Seventeen-year-old Andrew Perez is someone who has greatly benefited from Mariela's experience. Meeting Mariela was transformative for him. He was diagnosed with Osteosarcoma in April 2017, at 14 years old. The organization Jacob's Heart came into his life days after the diagnosis. "But I pushed them away," Andrew shares. "I wanted to be alone because I believed I was going to die." They began services with his family after he underwent major surgery. "The day I met Mariela was one of the most important days of my life. That day made me want to live. Seeing Mariela alive and healthy after her own experience with cancer made me realize I had a chance to make it through my treatment. Now we have an amazing bond and my whole family sees her as an extension of our family!" He has been in remission for just under two years. Andrew is very grateful to Jacob's Heart. "They helped us with everything. Counseling, food, gift cards, and gas cards were given to my family, anything we needed was there in days, sometimes even less." In 2018, Andrew raised $45,000 from selling his prized pigs through the 4H club. He set aside $40K for college. "He said it was enough to get to school," says Mariela. He took the other $5K and donated it to Jacobs Heart. "When Andrew gave me the check, he said it was out of gratitude for all the support we gave him," says Lori Butterworth, Jacob's Heart's Founder/ Executive Director. "He says we saved his life." Andrew challenged the community to help his $5K grow to $50K and he exceeded this goal. For 2019, he is donating $10K from his 4H sales and hopes donors will grow this to $100K by the end of the year. Now a senior at Gavilan Early College Academy, Andrew worked at Jacob's Heart this past summer. His role included doing outreach, speaking at events, and helping out in the office. "Working at Jacob's Heart was amazing. It brought me so much closer to the organization, and it was crazy to see how much goes on behind the scenes." Next year, Andrew hopes to attend Stanford University. Because of his experiences, he has switched his career focus from anesthesiology to pediatric oncology nursing. Thirteen-year-old Kiara Hinze, an eighth grader at Carmel Middle School, also utilizes teen services at Jacob's Heart. She clearly remembers when she was diagnosed with cancer (the official term was a Grade III Anaplastic Astrocytoma brain tumor). It was December 2017 at the age of 11. "I was nervous and scared and wanted to go home." Kiara first underwent radiation and chemotherapy from January to February 2018. Then, the chemotherapy was in cycles and extended over a six- month period. In August 2019, she began radiation again because the cancer had spread. Kiara appreciates that Jacob's Heart has been a part of her and her family's life since she was first diagnosed. "It feels nice to talk to other kids that are going through treatments like myself," says Kiara. "This helps me not have to think about it so much." Steve Hinze, Kiara's father, shares this appreciation: "Jacob's Heart has provided a lot of support for the family including activities, events, and resources to help on many different levels. We are grateful to have this support." Kiara has enjoyed going to programs the organization hosts. She was even named "Belle of the Ball" at a 2018 Jacob's Heart Golden Gallop event. Last month, Kiara attended the 21st annual family-friendly Kidrageous Golden Carnival in Watsonville, where proceeds benefit Jacob's Heart and every booth and activity is in honor or memory of a local child with cancer. "When Jacob's Heart does special events, it helps take things off my mind and I just have fun," says Kiara. "Jacob's Heart has given support to all of my family including my siblings and my stepsister," adds Kiara. "If someone in my family is having a hard time, they have resources to talk to." Kiara's mother, Brenda Hinze, says that Jacob's Heart has also helped in unexpected and wonderful ways. "They have given Kiara a voice, and showed her how to become a philanthropist for cancer," says Brenda. After raising funds to support Jacob's Heart, Kiara then raised money for her school. "Kiara is a fearless warrior. She has not only undergone chemotherapy and radiation, but also has been through multiple platelet transfusions— never once complaining. She spreads joy everywhere she goes and loves playing with younger children. Her favorite place to be is school with her teachers and friends who have collaborated to support her, including creating custom Team Kiara t-shirts. Local business Fashion Streaks donated the shirts. In early October, on the day Kiara returned to school, the entire eighth grade class and faculty wore their shirts and waited curbside to greet her. "The support is a true testament of Kiara's character," says Brenda, Kiara has danced since she was four, participating in tap, ballet, aerobatics, jazz, hip hop and lyrical. "I love to dance and I used to perform," she says. "I am waiting on my strength to return so I can continue dancing." She is involved with The Carmel Dance Company, and they have been "…another incredible source of support, sending her socks when first diagnosed (as this happened in the winter, they thought of her feet and staying warm)," says Brenda. "They continue to check in on her and welcome her to participate in class whenever she wishes." TEAM Impact is another organization that has helped Kiara. Jacob's Heart and TEAM Impact collaborated for Kiara and her family's attendance at a San Francisco 49ers training camp. "Also, TEAM Impact partnered Kiara with the California State University of Monterey Bay Volleyball Team," says Steve. "They have made her an honorary team member. They provide support and include Kiara in many activities from attending games, movie nights, girls' nights, grabbing ice cream, surprising her the first day school with flowers and balloons, and different team members visiting school to have lunch with her." Kiara is part of Carmel Middle School's leadership program. "I spoke at an assembly in front of the whole school last year about my cancer and treatment." She has also spoken at Carmel City Hall with Jacob's Heart about her cancer. "It makes me feel happy and helps me to speak about it, so people know what I am going through. This has also made it easier for me to talk in front of large groups. Adriana Moody, my Jacob's Heart Family Support Specialist, helped me to not be nervous to talk about it." (Adriana is Jacob's Heart's former Director of Family Services). Kiara and Andrew have both enjoyed Jacob's Heart's once-a-month Teen Group, which goes on a lot of outings. Mariela created this, which she describes as "an added bonus" to her job. "I saw a need, and wanted to create a safe and fun place for the teens to get away from their daily struggles," Mariela explains. The first group of the year is usually at the Jacob's Heart office to introduce any newcomers and discuss the upcoming months' plans. Most months, teens are picked up in Salinas or Watsonville and travel as a group to locations such as Great America, Petroglyph Ceramics, Glow Candle Lounge, the Boardwalk and bowling. Teens are also encouraged to visit the office's "Teen HUB:" two large rooms with arcade games, a 60-inch TV, board games and blankets. The Jacob's Heart Teen Group is comprised of many different individuals: those in treatment, those who have finished treatment, siblings to cancer patients, and siblings to children or teens with cancer who have died. "The group setting is a welcoming, loving space, where they support each other," says Mariela. "Kids end up forming friendships, connecting on social media, etc." Jacob's Heart staff member Daniela Ramirez is now a Family Support Specialist focused on younger kids. But she first became involved in 2018-19 while she was in college, working with tweens and teens as an intern under Mariela's supervision. During the monthly field trips, she transported teens. "I got to bond with teens; we would spend our time talking…I gained insight on what it's like to be an adolescent with cancer, and learned about physical, developmental, and emotional effects." Daniela says these outings help adolescent cancer survivors—whose social and emotional development were disrupted by cancer— socialize with other teens who experienced the same trauma as them. "Teens would socialize and have a great time. They looked so forward to attending, they would call early to RSVP. If someone wasn't there, the other teens asked about them." Teens are also helped on an emotional level. "Three of the teens opened up to me about their experience with cancer and how it changed their lives. They all mentioned feeling better talking about it." During her tenure at Jacob's Heart, Daniela has seen the Teen program strengthen and grow. A big part of Mariela's job is meeting with teens one on one doing home and hospital visits. Aside from working with teens, she works directly with families helping them with resources. Mariela has been with Jacob's Heart since 2014. She started by volunteering, then joined the staff and expanded the teen program. "Teens have very different needs than kids, so it's important to have specialized programs and activities," she says. They experience a lot of stress; this is partly because they are more aware of what is happening (compared to younger kids diagnosed with cancer). A week before her 14th birthday, Mariela was diagnosed with Hodgkins Lymphoma, Stage 4. She relapsed two times, and her cancer ended when she received a stem cell transplant. This year, she celebrates 13 years cancer-free. She is now 29. "I feel very blessed and grateful to be given the opportunity to be creative and help my teens out here at Jacob's Heart," she says. "They have taught me a lot about myself and I have grown so much since working here. It's helped me be a better mentor to them. They open up over time because it is my mission to make sure they do not feel alone in their fight." "We're looking into a study measuring social support as an intervention to mitigate or turn Post Traumatic Stress into Post Traumatic Growth," says Lori. "Current research is pretty conclusive that social support, the kind Mariela's program provides to our teens, is a key factor in turning post-traumatic stress into post-traumatic growth. We will measure PTG by how our teens reach out to help others in treatment after they finish their own treatment. We see it more and more as the Teen Group grows." With someone like Mariela leading the Jacob's Heart Teen Program, not to mention the other very committed Jacob's Heart staff and volunteers, the Teen Group—and all the programs—are bound to grow, helping many child, tween, and teen cancer patients and their families. "Some days there is a lot of chatter with the teens, some days it's just sitting with them and accompanying them with where they are at, other days we go on outings and have fun," says Mariela. "Always, we love and support each other hard. At the end of the day, I just want to be a vessel for them as they walk this difficult path. I want to hold the light for them whenever they are in need. Giving back to a community that gave so much to me feels amazing. I know I am in the right place." Details: Jacob's Heart Children's Cancer Support Services (and Family Center), 680 West Beach St., Watsonville, 831-724-9100, jacobsheart.org Hours: Monday though Friday 9 a.m. - 5 p.m. by Tara Fatemi Walker Mariela Medina Kiara Hinze Andrew Perez Andrew Perez

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