Giving back through volunteering at CHOC: Rosemary’s story

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

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

rosemary_lemonade stand
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.

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Beating brain cancer and giving back: Brodie’s story

Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC Children’s patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.

brodie-shopping-for-donations
Brodie and his brother shopping for gifts to donate to CHOC patients.

“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”

Brodie’s journey to a diagnosis

Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.

The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.

“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.

The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.

During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.

Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC Children’s. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.

They found a tumor.

Another starting line

“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”  

The family was introduced to Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s.

dr-ashley-plant-choc-childrens-oncologist
Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s

“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”

Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.

joffre-olaya-md
Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.

The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.

A doctor unlike the rest

Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.

“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”

Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.

“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”

Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.

Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.

“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”

Finding a familiar face at CHOC

While Brodie was admitted to CHOC Children’s Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.

Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.

Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.

“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”

Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.

Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.

“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”

Brodie today

Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.

“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”

With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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Two Oncologists with Special Interest in Immunotherapy Join Hyundai Cancer Institute at CHOC Children’s

Two oncologists have joined the team of nationally-recognized specialists of the Hyundai Cancer Institute at CHOC Children’s. Dr. Josephine HaDuong and Dr. Ashley Plant were both fellowship trained at two of the country’s top cancer programs, and share research interest in immunotherapy and targeted therapies.

Dr. Josephine HaDuong is board-certified in pediatric hematology and oncology, and was drawn to the Cancer Institute for what she refers to as its gold standard of care.

“The Hyundai Cancer Institute is a growing center that strives to be among the best. The team provides patients access to cutting-edge clinical trials that may lead to breakthroughs in pediatric cancer,” says Dr. HaDuong.

Her research is driven, in large part, by her clinical interest in caring for patients with solid tumors. A published author and principal investigator in a number of studies, Dr. HaDuong’s major research activities include exploring developmental therapeutics in solid tumors using immunomodulatory and targeted agents, as well as functional imaging in bone and soft tissue sarcomas using magnetic resonance spectroscopy.

Following medical school at the University of Pittsburgh, where she earned a full tuition merit scholarship, Dr. HaDuong completed her residency and pediatric hematology/oncology fellowship training at Children’s Hospital Los Angeles. She was honored with the Fellow of the Year, Excellence in Teaching Award.

She is a member of numerous professional associations, including American Society of Clinical Oncology, American Society of Pediatric Hematology and Oncology, and North American Consortium for Histiocytosis. In addition to English, she speaks Spanish and Vietnamese.

Raised in Orange County, Dr. HaDuong is thrilled to be back in her hometown. “I have always wanted to return home to serve the children and families in Orange County. I look forward to being a part of an incredible team who works relentlessly to end cancer,” says Dr. HaDuong.

Dr. Ashley Plant is committed to growing CHOC’s neuro-oncology treatment program, and eager to bring new therapies to patients with brain tumors. “I look forward to collaborating with academia and industry to bring early clinical trials to CHOC, especially in the area of immunotherapy. I am also excited to partner with my new colleagues to advance the work the Cancer Institute has been doing to reduce the long-term toxicities of cancer therapy,” says Dr. Plant.

Dr. Plant is a published author whose research interests include early phase clinical trial design for pediatric brain tumors. Her most recent project is a phase 1 clinical trial for a neo-antigen heat shock protein vaccine for diffuse intrinsic pontine glioma, a fatal brain tumor. She hopes to enroll patients in this trial within the next year. She considers herself fortunate to have worked under world-renowned immuno-oncologists Dr. Glenn Dranoff and Dr. Jerome Ritz at Dana Farber Cancer Institute in Boston. There, she won the Young Investigator Award for a project evaluating clonality of T cell receptors in pediatric gliomas.

Following medical school at Stanford University, Dr. Plant finished her residency at University of California, Los Angeles. Her fellowship training in pediatric hematology/oncology was completed at Boston Children’s Hospital. She received additional training in clinical trials and public health at Harvard Chan School of Public Health.

“I was attracted to CHOC because the hospital prioritizes excellent clinical care of patients above all else,” says Dr. Plant. “The hospital’s commitment to patient-and-family-centered care is something I wholeheartedly support. Cancer affects everyone in the family – physically, emotionally, psychologically and sometimes even financially. If we fail to address these issues, we are not completely caring for our patients and their families.”

Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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