Cancer Patient to Caregiver

When Kim was seventeen, her life looked much like a typical teenager’s. She had a part-time job, enjoyed trips to the beach with friends, and was anxiously awaiting her senior year of high school.

But when she found herself short of breath more often than her friends were, her mom brought her to a local emergency room , just in case. She was ultimately diagnosed with acute lymphoblastic leukemia.

She would spend the next 26 months in and out of CHOC Children’s fighting cancer, but always with an end goal in mind: to return someday as a hematology/oncology nurse at the Hyundai Cancer Institute, which she did, ten years after her diagnosis.

“Even back then I thought that when I was better, I was going to be a nurse at CHOC,” she says. “I don’t think I chose my career; I think it chose me. Ever since I got sick, there was never an option to do anything else, anywhere else.”

Despite spending so much time in and out of the hospital while fighting cancer, Kim says she never felt like a patient, something she credits to her nurses.

“I was very involved in my care because I was fascinated by medicine,” she says. “They had protocols to follow and did everything they needed to, but I never felt like a patient. I was always Kimberly.”

Despite knowing the hospital setting from a patient’s perspective, there were a few surprises when she joined the care team.

“At the time, I didn’t realize all the behind-the-scenes work of being a nurse,” Kim says. “No matter what stressful situation had occurred to them earlier that day or just before they came into my room, it didn’t matter. As soon as they would walk into my room, it was all about me, and they were leaving their stress at the door.”

She now works alongside several physicians and nurses who cared for her when she was a patient.

“A lot of times when I see them, despite the hustle and bustle of working in a hospital, they’ll take a moment to come up to me and hug me extra tight,” Kim says.

One of her nurses, Dana Moran, lights up every time she sees Kim. The two bonded over TV shows, movies and anything else Kim had wanted to talk about when she was a patient.

“At that age, it’s easy to become discouraged and shut down emotionally, but not Kim,” Dana says. “She was scared and she was sick, but she never lost her sense of humor. She remained strong and positive for the people around her who were worried about her.”

Small acts of kindness from nurses like Dana have stuck with Kim for more than a decade.

“My mom would tell me how the nurses brought her hot coffee every morning, and how much a small gesture like that meant so much to her. So, I try to tap into the little things like that, since I know they make such a big difference to patients and families,” she said.

Kim’s pediatric oncologist, Dr. Lilibeth Torno, met Kim’s ambulance upon her initial transfer to CHOC, and they now work side by side.

“I admitted Kim when she was first diagnosed. Her mom had a bouquet of flowers which she handed over to me,” Dr. Torno recalls. “As a former patient, she truly understands, more than anyone else, what it is like to have a life-threatening diagnosis. She experienced firsthand the difficult procedures and treatment her diagnosis entailed, and it has made her an effective advocate for her patients. It is a joy and privilege to walk this difficult journey with our patients. It truly makes my work meaningful to see them move on in life.”

Kim’s time as a patient also affected her career on a very detailed level.

“Whenever I do a task, no matter how small, I can remember when that was done to me, and I think it brings a softer touch to what I do,” she says. “My whole heart is in what I do. I treat my patients’ families like they were my own.”

Celebrating important milestones for patients is an especially heartfelt part of her role as a nurse.

“As much as we love seeing our patients here, there is nothing better than being able to send patients home,” Kim says. “I remember how happy I was to be sent home at the end of a hospital stay, and I love being able to help them celebrate by singing, “Happy Last Chemo to You.”

Have you been inspired by a nurse at CHOC? Nominate them for the Daisy Award

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Once a CHOC Oncology Patient, Now an Oncology Nurse

As a typical, happy-go-lucky six-year-old, Shaina was playing outside with her brother before dinner time, when her back started hurting.

She laid down on the couch to rest, but when her mom called her for dinner, she was too weak to even make it to the table. A trip to a local emergency room followed, and kidney stones were suspected. She was eventually transferred to CHOC Children’s. After additional testing, Shaina was diagnosed with neuroblastoma, a cancer that often starts in the tissue of the adrenal glands, on top of the kidneys. What they thought originally might be kidney stones, was actually the pain of her kidneys being crushed by a tumor that was growing inside her.

She underwent emergent surgery two days later to remove the tumor and one of her kidneys, and overcame the odds that were stacked against her.

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Shaina at age 6, as a patient at CHOC

“I was so young when I was diagnosed, so I don’t remember a lot of the scary parts of that time, but ever since, my family has been telling me stories about how wonderful my physicians and nurses were to our whole family during that time,” she says.

Those stories are part of the reason that six-year-old Shaina grew up to be a hematology/oncology nurse with the Hyundai Cancer Institute, in same hospital that saved her life almost two decades ago.

After surgery, Shaina was in and out of the hospital for chemotherapy treatments and a stem cell transplant. The first one hundred days after such a transplant are crucial to ensure a patient’s health and safety, and her family had to be abundantly cautious that her environment was as clean and safe as possible. At the end of those hundred days, her family threw a big party at their house to celebrate making it over the hump.

She relapsed a few months later.

Experimental treatment at various hospitals throughout Southern California followed, and three years later, she was cancer free for good.

Even during this time, Shaina knew she would return to CHOC someday.

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As a child fighting cancer, Shaina knew should would return to CHOC someday as a nurse.

Fast forward a few years and Shaina was a high school student. Searching for volunteer hours as part of her curriculum, she sought out volunteer opportunities at CHOC as a way to say thank you to the hospital that saved her life as a child.

She joined the Child Life team as a play room volunteer, helping normalize the hospital environment for patients utilizing the same play rooms she had sought an escape in while she was a patient.

She now works alongside some of the same physicians and nurses that cared for her as a child.

One of her primary oncology nurses, Dana Moran, gives her a big hug whenever they pass each other in the hallways.

“Shaina was so little when she was a patient here- she was so fragile and scared, but she was a strong kid with a strong personality, and that helped her get through her challenges,” Dana says. “Now it makes me proud to see her happy and healthy and back at CHOC caring for other kids.”

Her pediatric oncologist, Dr. Lilibeth Torno, keeps a photo from Shaina’s nursing school graduation on the desk in her office.

“I am really proud to have seen her grow and mature as a person and as a colleague in oncology,” Dr. Torno says. “I have seen her strength as she overcame challenges that cancer survivors go through and she did it successfully!”

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One in 10 Million

Two months after their son Ricky was born on Dec. 6, 2012, Richard Alcedo and his wife, Wendy, noticed he was getting small bumps on his face.

They took him to several doctors until a dermatologist did a skin test, diagnosing him with JXG (juvenile xanthogranuloma), an extremely rare disease that even in its common form affects only one in 1 million children, typically those 10 or younger.

One physician they consulted gave Alcedo a puzzled look after examining Ricky.

“This is new,” she said, reaching for her iPhone to look up information on the illness afflicting Ricky.

Alcedo knew that moment that he needed to take Ricky to another hospital—one with specialists highly trained in diagnosing and treating rare diseases like JXG, which acts like a cancer and responds to chemotherapy but technically is not a cancer.

“We ended up at CHOC where they had specialists who understood Ricky’s diagnosis,“ said Alcedo,“ and we knew immediately Ricky was in the right hands.”annual-report-2013-one-in-ten-million

Recognizing the rarest cases

Lilibeth Torno, M.D., clinical director of outpatient services and head of ambulatory care services at The Hyundai Cancer Institute at CHOC Children’s, examined Ricky.

She observed the brownish rash on his face and his distended stomach, confirmed that his liver and spleen were enlarged, and ordered MRI and ultrasound tests— something no other physician had done before.

The tests confirmed that Ricky not only had JXG, but systemic JXG—a rare form of the disease that afflicts only one in 10 million children. Dr. Torno started Ricky on mild chemotherapy.

JXG belongs to a group of illnesses called histiocytoses, which are associated with an excess of white blood cells that are supposed to fight infections, but for unknown reasons cluster together, forming bumps or lesions that attack different organs.

In systemic JXG, lesions are present in multiple organs.  Without proper treatment, the disease is fatal.

A team in search of a cure

Dr. Torno is one of 10 physicians at the Cancer Institute who are immersed in such cutting-edge research as molecular and genetic profiling to find out what triggers such diseases as JXG—and what can be done to cure them.

“CHOC Children’s is best equipped to treat such a disease,” Dr. Torno said. “Our goal is to be able to do genetic and molecular profiling of patients to help us understand eventually how these things happen.”

The institute sees close to 200 new patients a year, and many of its specialists are disease specific—for example, doctors assigned to a team for leukemia, and a team for brain tumors. The outpatient clinic provides comprehensive care for children undergoing chemotherapy, as well as those who have completed therapy.

Spreading the word

Dr. Torno says that Ricky is responding well to chemotherapy, which will continue through May 2014.  Then he will be reassessed.  JXG lesions sometimes can turn into tumors.

Although he and his family live just beyond the Orange County border, Alcedo had never heard of CHOC Children’s until Ricky’s godmother suggested he be treated there. Now Alcedo is determined to spread the word about the great care Ricky continues to receive.

To that end, the Alcedo family and Ricky participated in CHOC’s annual Walk in the Park at the Disneyland Resort.   Their goal was to raise $10,000.

The Alcedo family is enjoying Ricky—and resting a little easier knowing he’s in the expert hands of top specialists at CHOC Children’s.

“He’s a happy baby,” Alcedo says.  “He’s always smiling. The nurses have commented that they can’t believe he’s sick because he’s always smiling and happy.

“We are truly grateful for CHOC and everything they have done for us. Not only are they treating our son, but they are giving us peace of mind knowing that Ricky is in capable hands.”

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