Giving back through volunteering at CHOC: Rosemary’s story

By Rosemary Islava, current CHOC volunteer and mother of former CHOC patient Aliyah

When my daughter Aliyah was fighting cancer, my family spent a lot of time at CHOC Hospital.

Aliyah was diagnosed with a brain tumor at age 2. Before we were transferred to CHOC from a hospital closer to our house, I vaguely knew there was a children’s hospital in Orange, but I had no clue about the miracles and magic that happens within the walls of CHOC.

Throughout Aliyah’s journey, she underwent multiple brain surgeries and rounds of chemotherapy. Our family spent as much time by her side as possible. Aliyah’s siblings practically grew up at CHOC. At one point, Aliyah stayed in the hospital for seven months straight.

Rosemary and Aliyah
Rosemary and Aliyah

Aliyah beat cancer once, and then had to regain her ability to walk, talk, eat, sit, hold her head up—everything. As you can imagine, throughout this journey our family got to know practically everyone at CHOC—doctors, nurses, physical therapists, security guards, cafeteria staff, the sweet staff who cleaned Aliyah’s room, and more. They became like family to us.

Aliyah was always a very determined and caring little girl. Although she was soft-spoken, she was a firecracker. She taught me what true strength was, even though I think it should’ve been the other way around.

After a few years of remission, Aliyah’s cancer returned when she was 9, and she passed away shortly after her 10th birthday. The special way her doctors and nurses cared for her throughout her life didn’t end when she passed away—several of them even spoke at her memorial service.

Caring for others the way CHOC cared for my family

A year after Aliyah passed away, I joined CHOC’s mighty brigade of volunteers. Everyone at CHOC had done whatever they could – for years – to make Aliyah feel like the princess she was. They also made our experience as a family easy and comfortable, and I wanted to pay it forward.

You might assume that volunteering at a hospital is sad. If that were the case, I wouldn’t be here. For me, the opposite is true. Yes, sometimes people get bad news here. But more common that, volunteers and staff get a front-row seat to the resilience CHOC patients display every day.

I was open to serving anywhere the hospital needed me, but I was placed on the oncology unit. During my weekly volunteer shift, I get to serve in all sorts of ways, from helping nurses re-stock supply carts with much-needed supplies, playing board games with patients who need a buddy, or making a cup of coffee for a tired parent. I love assisting families through the discharge process—loading up a red wagon with their belongings and helping them get to their car. I celebrate with them when they can take their child home.

My family was treated so well during our time at CHOC, and it’s a privilege to pay it forward to other families. Whenever I leave CHOC, my heart feels full.

Each week, I proudly put on the traditional blue smock worn by hospital volunteers, along with my CHOC volunteer ID badge. My badge holder includes a photo of Aliyah. Sometimes patients will see Aliyah’s photo and ask about her. Everyone’s journey is different, so I’m careful about what I tell them.

Honoring Aliyah’s memory

My family has found other ways to honor Aliyah’s memory as well. Her birthday was September 19, during Childhood Cancer Awareness Month. Last year to celebrate her birthday – a few months after she passed away—we collected boxes of fun band-aids to support the hematology/oncology unit at CHOC’s band-aid drive. You might think a band-aid is a small gesture, but to a hospitalized child, a band-aid in their favorite color or bearing their favorite character, can be a bright spot.

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This year on Aliyah’s birthday, her family held a lemonade stand to raise money for CHOC.

This year for Aliyah’s birthday we held a lemonade stand to raise money for CHOC. We had a great turnout—family members, friends, neighbors, community members, even the fire department showed up! We donated the funds raised to support research efforts by Aliyah’s oncologist, Dr. Ashley Plant.

Making my daughter proud

Throughout Aliyah’s battle with cancer, I felt so grateful for the way her team at CHOC cared for her. That’s why I’m back, volunteering at CHOC—to have a chance to pay it forward to other families and the staff here.

I think the way I am serving other CHOC families would make Aliyah proud.

CHOC Volunteer Forms Friendship with Patient

After retiring from a storied career in corporate communications and marketing, Fran was looking to give back in her community. Having spent much of her adult life in Orange County, she was aware of the impact CHOC has had on the place she has called home for decades.

“When I was exploring volunteer opportunities at CHOC, I knew that I wanted a position where I could engage with patients,” Fran recalls. “When volunteer services described all that the Family Resource Center offers to patients and families, I knew it was the perfect place for me.”

Today, Fran staffs the Family Resource Center (FRC) located on the second floor of the Bill Holmes Tower. The FRC is a space where patients and families can read books and choose one to take home, rent movies, play games, utilize a computer lab, research their child’s diagnosis with medical and developmental literature, and decompress with arts and crafts.

Through her weekly shifts and as host of the FRC’s weekly Story Time, which is broadcast to all patient rooms within CHOC’s Orange campus, Fran has formed a special bond with 12-year-old patient Evelyn, who has been a CHOC patient for nearly her entire life.

Before she was born, Evelyn was diagnosed with complex congenital heart disease. Her heart defect is commonly associated with Trisomy 21 (more commonly known as Down syndrome). Two valves within Evelyn’s heart― the mitral and tricuspid valves― as well as the walls separating the heart chambers, did not develop correctly, which caused the right side of her heart to be underdeveloped and non-functional. Unfortunately, this condition can’t be “fixed,” only managed. This is typically done through three surgeries: the BT or Central Shunt, normally in the first days of life; the Bidirectional Glenn, usually between 3 and 9 months of age; and the Fontan, usually between 2 and 5 years.

In a typical heart, the right side of the heart pumps deoxygenated blood to the lungs, and the left side pumps oxygenated blood to the body. Because Evelyn’s right heart is too small to carry out its normal function, Evelyn has what’s referred to as single ventricle physiology. The purpose of the surgeries is to re-route the vessels around the heart so the one functional chamber pumps oxygenated blood to the body, and the deoxygenated blood bypasses the heart and passively drains back to the lungs.

Evelyn underwent her Central Shunt procedure at two months old to establish reliable blood flow to her lungs. Her Glenn procedure took place just after her first birthday to route the blood flow from the upper part of her body to her lungs. Her third heart surgery, the Fontan, took place when she was seven years old to re-route the remaining blood flow to her lungs. All three surgeries were performed by Dr. Richard Gates, director of cardiothoracic surgery at CHOC, co-medical director of the CHOC Heart Institute, and CHOC’s surgeon-in-chief.

In addition to check-ups for her heart every few months with pediatric cardiologist Dr. Pierangelo Renella. Evelyn makes visits to CHOC weekly for platelet transfusions. Along with her heart conditions, she was also diagnosed with idiopathic thrombocytopenic purpura (ITP), meaning she has low levels of platelets, a part of the blood that prevents bleeding.

Spending so much time in and out of the hospital and shuffling between doctor’s appointments could easily make a child scared of going to the doctor. That’s not the case with Evelyn.

“Everyone we’ve encountered at CHOC has been very kind to us. All CHOC staff is very patient with her and takes a lot of time with her,” says Evelyn’s mom Rosa. “I’m very thankful because thanks to CHOC, Evelyn is doing well.”

No matter the reason they’re visiting CHOC, Evelyn and Rosa always make a point to stop by the FRC, especially on days that Fran is volunteering.

“It makes me sad that patients are here long enough or often enough to get to know their names,” Fran says. “But I’m happy we get to offer them a distraction and sense of normalcy.”

Even though Evelyn doesn’t love reading, she loves being read to―especially by Fran. In addition to arriving early enough for appointments to make Fran’s Story Time, Evelyn loves playing blocks with her friend Fran as well.

“She feels right at home here in the FRC,” says Rosa. “Fran is very sweet to Evelyn and I appreciate everything she does for my daughter.

The admiration goes both ways.

“Evelyn is always so upbeat. Her energy is infectious. I sometimes feel that I get more out of volunteering than I give,” Fran says.

Being a bright spot in a patient’s day is what keeps Fran so connected to her role as a volunteer.

“If you can make a little one smile, then you’re doing something good.”

Learn more about becoming a CHOC volunteer.

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A Pageant Winner’s Donation to CHOC

Emma Foss, a Miss America Organization pageant winner from Tustin, California, turned her on-stage talent into a fundraising campaign to inspire others to make a creative donation to CHOC.

Entering Chapman University as a freshman art major and psychology minor in 2014, Emma enrolled in scholarship pageants through the Miss America Organization, a partner of Children’s Miracle Network (CMN) hospitals, such as CHOC.

Her talent: speed painting.

“I couldn’t sing or dance to save my life, so I came up with speed painting after watching internet videos of some incredible speed painters,” she recalls.

Emma immediately got to work teaching herself her new-found talent. She uses a black canvas, black paint, and silver or gold glitter to create incredible portraits in under a minute and thirty seconds.

With a brush in her hand, and a goal in her heart, Emma went on to hold the titles of Miss Tustin 2014, Miss City of Los Angeles 2016, and Miss Tustin 2017.

Contestants within the Miss America Organization are active fundraisers for CMN hospitals such as CHOC. Emma already had a special place in her heart for CHOC, since her mom had been a social worker at the hospital before Emma was born. In addition to helping raise much-needed funds, Emma began volunteering in the CHOC playrooms.

emma-foss-color-for-the-kids-donation-to-choc-2
Emma Foss, a volunteer in a playroom at CHOC, designed coloring books to boost donations to CHOC.

While spending time in a playroom one day, Emma observed a young girl coloring a page from a kids’ coloring book. The girl’s mother tore a page out from her daughter’s book and began coloring it herself to take her mind off being at the hospital. It was at this moment that Emma decided to use her artistic abilities to help parents and teens who are dealing with the stress that can come with a hospitalization.

She created a 40-page coloring book for teens and adults.

“I realized that there were a lot of child-based toys, but these weren’t toys for teenagers or adults in the hospital. I wanted to use my skills to do something for the older kids,” Emma says.

Inspiration for the floral designs in her coloring book came from an anonymous quote:

“Every child is a different flower, and all together they make this world a beautiful garden.”

Emma says of her inspiration, “I loved this quote because CHOC’s goal is to nurture children, like flowers, and help them grow.”

All net proceeds from her book, “Color for the Kids,” are being donated to CHOC through Children’s Miracle Network. Anyone who purchases a coloring book for themselves on her website also has the option of making a donation to CHOC in which a book will be sent directly to a playroom in the hospital.

Bree Johnston, the assistant director of cause marketing and CMN at CHOC, was beyond excited to help Emma put this heartfelt and unique fundraising campaign into place.

“There is something to be said about an individual who can find a way to perfectly align their passions and their purpose. What Emma has done is a testament to the core values of the Miss America Organization and demonstrates how her inner beauty radiates through her artwork. We are overjoyed by how well the books have been received as these donations will directly affect the lives of our patients and families in so many ways,” explains Bree.

choc-childrens-volunteer-with-coloring-books-as-donation-to-choc
Inspired by her time as a volunteer in a playroom at CHOC, Emma designed coloring books to boost donations to CHOC.

Emma advertises “Color for the Kids,” created through her non-profit of the same name, via social media and promotional booths at local events. In addition, she brings a handful of books to the hospital during every volunteer shift to market.

“The children at CHOC have brought light into my life. In turn, I want to walk these kids through art and inspire them, as they have inspired me,” Emma says.

For more information, visit http://www.colorforthekids.org.

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My Journey from CHOC Patient to CHOC Volunteer

Written by Daniel Boucher, cancer survivor and current CHOC volunteer

My name is Daniel, and ever since I can remember, I have always wanted to play football for the University of Notre Dame. I had many motivations: my dad went there, they put academics before football, and I consider it almost a holy place, where people
“surrender to excellence” in their personal life, academics and community. And I had an athletic build too. At 10 years old, I was already 5 feet 2 inches and well on my way to achieving, if not surpassing, my dad’s height of 6 feet 3 inches. I had a competitive, determined drive in any situation. I was only satisfied if I gave my all.

I was ten years old when everything changed. It was a November afternoon and I was doing what I loved most― playing football. Trying to tackle my little brother, I followed the advice so often quoted in sports: keep your eye on the ball. As a consequence, I ran into a tree face first. I came home and threw up once or twice, but otherwise seemed unharmed. I didn’t really lose consciousness, but my dad took me to the emergency room just to be safe. That visit changed my life. It was a slow day, and there was an available CAT scan machine. Figuring that it would be no harm, the doctor ordered a scan. That scan revealed a cancerous mass sitting on the edge of my spinal cord.

Within hours, I was diagnosed with medulloblastoma, a type of cancer that often spreads to other parts of the brain and spinal cord. I met my pediatric neurosurgeon, Dr. William Loudon, and was scheduled for brain surgery. I remember watching “Honey I Shrunk the Kids” before surgery and telling my younger brother (whether out of innocence or the sheer confidence and determination I applied to every situation) that I’d be home in a week. If my parents heard me say this, they never tried to tell me otherwise. My dad later confided in me that this was one time where he truly thought I wasn’t going to make it. I didn’t fulfill my promise to my brother- after surgery the doctors kept me unconscious for two days, giving my brain the best chance to recover from the surgery, and stayed in the hospital for two weeks before I got to go home. It felt so good to be in my own bed again that I slept for 21 hours straight.

My immune system was weak, and when I came down with a fever I had to go back to the hospital. Unfortunately, it turned out to be a symptom of pressure buildup in my spine. I remember that the hospital was getting in the Christmas spirit at that time. There was holiday music playing and I even got to attend a party while I was admitted, but I got to go home in time for Christmas. After the holidays, I started on my cancer’s treatment regimen under the careful eye of my oncologist, Dr. Lilibeth Torno.

daniel-choc-neurosurgery-patient-to-choc-volunteer

For the entire month of January, Monday through Friday, I would go to the CHOC Outpatient Infusion Center (OPI) cancer center from 8 a.m. – 12 p.m. There, I received chemotherapy treatments delivered intravenously through my portacath, which connected to an artery on my chest and made access to a blood vessel less painful and more practical than a needle in my arm. I usually slept for the first hour of my infusion. Later in the session, my mom would feed me ramen and read me “The BFG” by Ronal Dahl. Eventually my appetite increased so that I went back to eating my favorite food of corn dogs, and socializing to the point of befriending many of the nurses and asking if they had any ketchup. You can’t eat a corndog without ketchup. The nurses were so kind and hated to see me uncomfortable and they would bend over backward to help. A tall nurse named Ron took especially great care of me, and once I had asked for it, would bring me ketchup every day.

After chemotherapy, my mom and I would walk the CHOC hallways to the radiology department. My radiation treatment was twofold, one dose to the tumor site and one dose to the general brain. When I laid on the table to receive radiation, a special mask molded to my face and tattooed pinpoints on my back helped me line up in the exact right spot. Technicians would line me up and then I would lie for what seemed like hours (it was never that long) until they returned to help me up and send me home.

After I completed this first part of my strict but successful treatment plan, I came into the hospital for one weekend every three weeks. John was my favorite nurse and used to play practical jokes on me to cheer me up. I had a tricky vein but he could always get my IV inserted without hurting me. My dad came with me on these trips, and if I was feeling well enough, I got to visit the play room and receive visitors. My siblings would often come and we loved to play on the X-men arcade console. The machine had been modified to work without quarters, and we fully exploited this.

That June, I finished my last chemo treatment. It was a momentous occasion and my family hosted a party to celebrate. There was a bounce house, a slip and slide, and all my favorite foods. We even made a giant finish line banner across our driveway and t-shirts for the family. My favorite part, however, was visiting with my friends and family who had so generously helped with the behind-the-scenes work. Those who watched my younger siblings while mom was with me in the hospital, who made dinners, and especially who prayed unceasingly for my recovery and for my family.

Was I the same person who had hit that tree almost a year prior? No. Did I still have that physical strength to rush up and down a football field tackling other players? No. But the same attributes I’d always had within me in sports had been used to help me through my struggles. I had developed a different kind of toughness, one that is much more important. I may not have been able to run and throw a football down the field, but with my strong active spirit, I would look for new, less physical, adventures.

Recently I was invited to speak at a fundraiser to benefit neurosurgery at CHOC, so that Dr. Loudon and his colleagues can continue helping more kids the way they helped me when I was a patient. The event was a success, but the best part was getting to hang out with Dr. Loudon.

These days, I’m back at CHOC― this time as a volunteer. I get to entertain kids in the same waiting rooms I used to visit as a patient. I read books, play games, do puppet show, and just be their buddy when they need entertainment or a distraction. I also get to host Turtle Talk, an interactive show in the Disneyland Resort lobby of the Bill Holmes Tower, where patients and siblings can interact and have live conversations with Crush, the animated sea turtle from “Finding Nemo.” Sometimes I even run into Dr. Loudon and Dr. Torno. I really appreciated the efforts of CHOC to make me motivated and happy, (not to mention the medical care to recover from my disease), and am now proud to help make your stay as good as mine.

Learn more about neurosurgery at CHOC

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Lifelong Pediatrician Becomes CHOC Volunteer

Each year, nearly 1,000 CHOC volunteers provide more than 100,000 hours of service. Every day, they graciously donate their time and talents to help CHOC provide the very best pediatric services in Orange County. This week, CHOC celebrates National Volunteer Appreciation Week, and we salute our dedicated and enthusiastic team of volunteers.

Volunteers come to CHOC for a variety of reasons: some wish to donate their time as a way to give back to a hospital that cared for their child, while others have an interest in medicine.

Jack Bruno is the latter. Having spent 39 years as a pediatrician and nearly 20 of those as vice president of medical affairs at an east coast hospital, Dr. Bruno has cared for thousands of children and their families. After retiring to sunny Southern California with his wife to be closer to his grown children, he decided to give back by volunteering his time at CHOC.

choc volunteer
Dr. Jack Bruno, a CHOC volunteer

“When I moved to California, aside from family, I didn’t know too many people, and I knew that I wanted to have some contact within a pediatric hospital system,” says Dr. Bruno. “So much of my adult life had been engaged in health care, and since I had the time, I decided to volunteer. From living in Orange County I knew about CHOC and I thought I would apply to volunteer.”

As a lead patient hospitality volunteer, Dr. Bruno assists families during the discharge process and ensures they get safely from their hospital room to their car, and that nothing gets left behind. He also makes rounds on various units in the hospital, checking in with parents to see if there’s anything they need, even just a cup of coffee or break to have an adult conversation that’s non-medical. Even when his volunteer services are needed as a patient buddy, keeping a little one company and playing games while their parent has to run an errand, it’s rare that a family finds out that he was a pediatrician for nearly four decades.

“I don’t generally volunteer my background as a pediatrician and hospital executive since I am not in the room to provide medical advice. I leave that up to the excellent medical staff at CHOC,” Dr. Bruno says. “A couple of times it has come up when talking to a family, but hospitality volunteers are mainly there to provide companionship and some assistance.”

Dr. Bruno says that many of qualities he admired about his own patients he also sees in children and families at CHOC.

“One of the things I learned from years of practicing medicine and what I see again is a sense of fulfillment. Families are so strong. They often have various serious illnesses to battle, they might be in and out of the hospital frequently, but I draw strength from how they handle their situation,” Dr. Bruno says. “When you have a sick child, even if they will likely make a full recovery, it’s still a stressful experience for the parents and siblings. Part of the reason I like to volunteer is to see if I can help relieve some of that stress.”

Current volunteer opportunities at CHOC

Volunteers are special group at CHOC that provides vital assistance in all hospital departments, as well as at CHOC at Mission Hospital.

Currently, our highest needs are weekday shifts from 8 a.m. – 4 p.m. Night and weekend opportunities are limited. Assignments ae based on a combination of the current needs of the patient population, as well as the interests and skill sets of the volunteer.

Some of our CHOC volunteers:

  • Greet visitors as they arrive
  • Escort families around the hospital
  • Help visitors and families in the Family Resource Center
  • Organize coloring and reading activities for patients in our waiting areas
  • Assist our child life specialists in playrooms

choc volunteer

Another aspect of our robust volunteer program is pet therapy, an opportunity for volunteers with dogs who are certified by Pet Partners, a non-profit that registers therapy animals. Pet therapy can play an important part of a patient’s treatment by minimizing stress associated with a hospitalization, offering normal-life experiences, offering a distraction from pain, and encouraging patients to complete treatment goals like walking. The pet therapy program at CHOC at Mission Hospital is currenty accepting volunteers. For more information, please email volunteers@choc.org.

Learn more about becoming a CHOC volunteer.

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