CHOC Nurse, Patient Share Love of Music

Music has been a bright spot for Christine throughout her entire life – and especially while undergoing treatment at the Hyundai Cancer Institute at CHOC Children’s.

And when CHOC nurse Erika Crawford heard Christine playing a familiar song on a piano while receiving chemotherapy treatment one day, she spoke up.

“I told her I knew that song on the ukulele, and that we should play together,” Erika recalls.

Since then, the pair has regularly jammed together while Christine, 17, is in CHOC’s Outpatient Infusion Center. Inspired by Erika, Christine started learning the ukulele and the pair will tinker on songs together.

They even gave their duo a name: E.C. Teal, which incorporates their initials and the color they both happened to wear one day.

Because infusions can take hours, music helps Christine pass the time and take her mind off her condition.

“I’ve always loved music,” she says. “Going through cancer made me realized just how much I loved music.”

Erika began playing the ukulele only a year ago. She was previously learning the guitar and thought its smaller cousin might help her learn faster. And now, it serves as another way for her to connect with patients like Christine.

“It’s fantastic,” she says. “It’s the best part of the job.”

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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.

choc oncology
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.

choc oncology
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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Sibling Caretaker Becomes CHOC Hematology/Oncology Nurse

She was barely through her first year of high school, but Emily Gruendyke was determined to be a nurse. A pediatric oncology nurse, specifically. The young teen carefully mapped the steps she would take to achieve her career goal. Nothing was going to stand in her way. And, sure enough, today Emily is a hematology/oncology nurse at the Hyundai Cancer Institute at CHOC Children’s.

Emily’s family supported her calling from day one, especially her younger sister Amanda. Better than anyone, Amanda knew Emily would be a great oncology nurse. She experienced Emily’s nurturing care often, especially after being diagnosed with a type of cancer called neuroblastoma. The diagnosis—delivered when Amanda was 9 and Emily was 14—affected the entire family. Emily quickly learned just how isolating the disease could be — not just for the patient, but for parents and siblings.

choc hematology/oncology
Emily and her late sister Amanda, at Disneyland.

“During the first year of Amanda’s treatment, she and my mom spent 200 nights at the hospital, which was about an hour from our home. I would only get to see them on weekends. And, as much as my friends cared, they didn’t really understand what we were all going through,” explains Emily.

When Emily was able to visit Amanda at the hospital, she noted the impact nurses had on her mom and sister.

“My hospital visits really opened my eyes to what nursing could do. I witnessed the difference a good nurse had on my mom and Amanda,” says Emily.

One experience was particularly impactful for Emily.

“The first night my mom and sister were home, following the start of her treatment, a nurse stopped by the house to show my mom how to hook up all of the medical equipment. Though I don’t blame the nurse, she breezed through all of the steps and didn’t really make sure my mom was comfortable with what she had to do. Later in the evening, I remember my mom crying at not being able to recall everything. Another nurse came out and did an amazing job educating my mom. More than that, the nurse empowered my mom as a caregiver. I knew that was the kind of nurse I wanted to be,” shares Emily.

As a CHOC hematology/oncology nurse, Emily is steadfastly dedicated to providing her patients’ families with the knowledge and confidence to take care of their children. She works hard to help her patients and families get through treatment and adjust to their “new normal.”  And, just as she was inspired by her sister’s strength, she admires the inspiring resiliency of her patients. She also takes the time to acknowledge her patients’ siblings.

“A cancer diagnosis is tough on everyone and sometimes siblings can get inadvertently left out. I understand siblings’ point of view. I take time to not only ask if they have questions about cancer and involve them in the care—if that’s what they want—but I also ask them about their own interests,” says Emily, who is proud to be part of a team committed to patient- and family-centered care.

Emily’s sister lost her battle to cancer after a brave 12-year fight. Emily had been CHOC hematology/oncology nurse for four years at that point, of which Amanda was very proud. And despite the difficulties that came with having a sister with cancer, Emily’s family was grateful that she found a calling that would positively impact so many other hurting families. Emily can’t imagine doing anything else.

“Even though my sister passed away from her cancer, which was devastating to our family, I feel so strongly that being a pediatric oncology nurse is what I was made to do. I would not want any other job in the world. And I know Amanda wouldn’t want me doing any other job either,” says Emily.

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Lessons Learned During a Senior Year Spent Fighting Cancer

aya

By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

aya

As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

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

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Oncology Patient Returns to CHOC as Oncology Nurse

In honor of Childhood Cancer Awareness Month, we share a poem written by Kim, a registered nurse in the hematology/oncology unit at CHOC Children’s, at the time she finished her training. Kim is a cancer survivor and former CHOC patient.

Serendipity

I had no idea what this was going to bring up

All these memories and feelings I have folded so neatly in a cup

Tucked away never again to be touched

Walking back into CHOC, oh how I have forgotten so much

You see, I once had cancer too

I came back as a nurse to see what I could do

I once told my own nurses, now peers, I will be back. Something I am sure they heard before

10 years later I walk through CHOC’s door

As a registered nurse I am proud to be

But I never underestimate the patient that is still inside of me

People have told me it takes certain strength to face it again

“Doesn’t it remind you of all your pain?”

My pain?, I think, I am one of the lucky ones.

I get to come to work and I have fun

I am allowed to make funny faces

I make kids laugh and participate in car chases

I am able to share in life’s precious moments daily

Except for the need of possibly doing a Foley

Even when I am running around like a chicken with no head

I will always take time for that scared kiddo sitting in the bed

There are times when I step back and remember

When that was once me waiting for a cure

This hasn’t been easy, seeing the chemo’s and procedures

And sitting through those late effects lectures

Sometimes when the day has been hard I ask myself, “Why did I pick THIS? What else could I have been?”

But I quickly remind myself I didn’t pick this- it picked me way back when.

I am surrounded by hope, a side people do not see

For I am a proud survivor and now registered nurse of pediatric oncology.

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U.S. News Names CHOC One of the Nation’s Best Children’s Hospitals

From treating the most complicated cases of epilepsy and repairing complex urological conditions, to curing cancer and saving premature lives, CHOC Children’s physicians and staff are committed to delivering the highest levels of safe, quality care. That commitment has earned CHOC its most recent accolade:  inclusion on the coveted U.S. News & World Report’s Best Children’s Hospitals rankings.   CHOC ranked in eight specialties: cancer, neonatology, neurology/neurosurgery, pulmonology, orthopedics, gastroenterology and GI surgery, diabetes and endocrinology, and urology, which earned a “top 25” spot.

U.S. news

According to U.S. News, the Best Children’s Hospitals rankings are intended to help parents determine where to get the best medical care for their children. The rankings highlight the top 50 U.S. pediatric facilities in 10 specialties, from cancer to urology. Of the 183 participating medical centers, only 78 hospitals ranked in at least one specialty. For its list, U.S. News relies on extensive clinical and operational data, including survival rates, clinic and procedure volume, infection control measures and outcomes, which can be viewed at http://health.usnews.com/best-hospitals/pediatric-rankings. An annual survey of pediatric specialists accounts for 15 percent of participants’ final scores.

“The Best Children’s Hospitals highlight the pediatric centers that offer exceptional care for the kids who need the most help,” says U.S. News Health Rankings Editor Avery Comarow. “Day in and day out, they offer state-of-the-art medical care.”

Dr. James Cappon, chief quality and patient safety officer at CHOC, points to the survey as an invaluable tool for him and his colleagues to evaluate programs and services, determining best practices, and making plans for the immediate and long-term future.

“CHOC is certainly honored to be recognized once again by U.S. News. But our dedication to serving the best interests of the children and families in our community is what truly drives us to pursue excellence in everything we do. Our scores, especially in the areas of patient-and-family-centered care, commitment to best practices, infection prevention, breadth and scope of specialists and services, and health information technology, for example, reflect our culture of providing the very best care to our patients,” explains Dr. Cappon. To hear more about CHOC’s commitment to patient safety and quality care—and what parents need to know— listen to this podcast.

CHOC’s culture of excellence has it earned it numerous accolades, including being named, multiple times, a Leapfrog Top Hospital. Additional recent honors include the gold-level CAPE Award from the California Council of Excellence; Magnet designation for nursing; gold-level Beacon Award for Excellence, a distinction earned twice by CHOC’s pediatric intensive care unit team; “Most Wired Hospital”; and The Advisory Board Company’s 2016 Workplace Transformation Award and Workplace of the Year Award. Inspiring the best in her team, CHOC’s President and CEO Kimberly Chavalas Cripe was recently named a winner of the EY Entrepreneur of the Year Award in the “Community Contributions” category.

CHOC Children’s Joins National Cancer Consortium

The Hyundai Cancer Institute at CHOC Children’s took yet another bold step in its fight against pediatric cancer by uniting with Cancer Moonshot 2020.  CHOC is one of 10 founding members of a national pediatrics consortium announced at a press conference on Feb. 18, 2016, and dedicated to accelerating cancer cures through immunotherapy.  All partners will seek to apply the most comprehensive cancer molecular diagnostic testing available, and leverage proven and promising combination immunotherapies and clinical trials. Real time data sharing is designed to accelerate clinical learning for all consortium members.

“The Pediatric Cancer Moonshot 2020 will attempt to cure all the numerous types of pediatric cancer with the least toxicity by harnessing patients’ own immune systems and using the tumors’ unique genomic mutations to create individualized cancer vaccines,” explains Dr. Leonard Sender, medical director, Hyundai Cancer Institute.

Dr. Sender has positioned CHOC a leader in the field of innovative genomic medicine techniques. In addition to being designated a Caris Center of Excellence for its commitment to precision medicine, CHOC is a participant in the California Kids Cancer Comparison, bringing the benefit of big data bioinformatics to its patients. And, CHOC recently enrolled its first patient in a multi-center clinical study for the treatment of relapsed or refractory acute lymphoblastic leukemia (ALL) with investigational immunotherapy.

“CHOC has studied whole genome sequencing for several years, and our team recognizes its value to clinical decision making. Now, with the availability of the next generation of molecular diagnostics, we are excited by the acceleration of knowledge that this system will provide and are honored to be a founding member of such an important initiative,” says Dr. Sender.

20140916_2770 Three major drivers of the Cancer Moonshot 2020 Pediatrics Consortium are:

  1. The recognition that cancer is caused by any one of a multiple number of genetic mutations, with thousands of molecular alterations presenting within each pediatric cancer patient. Consortium members and their patients will benefit from the most comprehensive molecular diagnosis in the market today.
  2. The significant fragmentation across the healthcare ecosystem. More specifically, pharmaceutical drug development often occurs in silos with limited ability to share clinical information. Consortium members recognize that collaboration across medical and scientific communities will help remove barriers to accelerated progress in the war on pediatric cancer.
  3. The lack of a comprehensive data sharing system, including participation by pharmaceutical companies, for individual children cancer centers. Consortium members will have access to Cancer Moonshot 2020’s national, robust and scaled cloud infrastructure enabling the ability to share data in real time and provide access to breakthrough knowledge.

In addition to CHOC, founding members of the Cancer Moonshot 2020 Pediatrics Consortium are:

  • Ann & Robert H. Lurie Children’s Hospital
  • Children’s Healthcare of Atlanta
  • Children’s Hospital of Philadelphia
  • Children’s Hospital of Pittsburgh of UPMC
  • Duke Department of Pediatrics at Duke University School of Medicine
  • Floating Hospital for Children at Tufts Medical Center
  • Huntsman Cancer Institute at the University of Utah and Intermountain Primary Children’s Hospital
  • Phoenix Children’s Hospital
  • Sanford Health

Celebrate National Cancer Survivors Day

In honor of National Cancer Survivors Day on June 7, check out this video where patients and staff at the Hyundai Cancer Institute at CHOC Children’s groove to Lady Antebellum’s “Compass” and show how they let their hearts be their compasses.

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Carter was diagnosed with a rare form of liver cancer but is now cancer free thanks to CHOC.

carterKara Kipp has been a member of the Glass Slipper Guild for the past nine years. She and her husband Matt are the proud parents of three amazing boys, Bennett, Carter and Davis.

On April 17, 2009 their son Carter, seemingly healthy 22-month old was diagnosed with a rare form of liver cancer called hepatoblastoma. Less than 48 hours after being diagnosed, Carter was checked into CHOC Children’s and the oncology floor became their reality. Carter’s road map of action entailed four rounds of chemotherapy, then resection surgery and liver transplant, followed by two more rounds of chemotherapy. Carter did remarkably well from his transplant and after four weeks of recovery, went into CHOC for his final two rounds of chemo. Carter is now having follow-up scans and blood work done, and everything looks great for Carter. Carter has been cancer-free for four years.

The nurses and doctors at CHOC became the Kipps extended family, and Carter still considers them his closest friends. Not having an opportunity to interact with other kids his age, he thinks it’s perfectly normal to have so many doctors and nurses as his buddies.

The Kipp Family is forever grateful for CHOC and their leadership in making their son cancer-free.

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A Bright Future: Amy’s and Emily’s story

I’m more than half way through my 50-week CHOC gratitude tour, and I just met two others who want to join me in thanking the hospital for our bright futures: Meet Amy and Emily.

Sisters Amy and Emily believe they IMAGE_2have two birthdays: the days they were born, and the days they were diagnosed with cancer before beginning treatment at CHOC Children’s.

Each day is met with equal celebration. Amy and Emily, ages 29 and 18, see the anniversary or their diagnosis – their cancerversary – as the day they began the long road toward health.

“We think that’s the day of them starting to get better,” says their mother, Denise Justiniano. “We made that day a good memory. We eat dinner together as a family and make a fun time out of it.”

Both women received treatment as children at the Hyundai Cancer Institute at CHOC. Amy spent six months in the hospital after being diagnosed with lymphoma in 2001. Diagnosed with leukemia in 2008, Emily still receives treatment at CHOC’s outpatient infusion clinic.

And today both women are moving forward: Emily graduated from high school last June and is now in her second semester at college. About seven months ago, Amy gave birth to her second daughter.

“The nurses and doctors at CHOC are amazing,” Amy says. “Not only do they offer the best medical care, but they are empathetic and caring, and offer emotional support in a way that you would expect only a friend to. If it weren’t for CHOC, I wouldn’t be here today. They made a huge difference in my life and helped me become the person that I am today.”

Watching two children battle cancer was heart-wrenching, but Denise credits CHOC staff and fellow families and patients with helping to ease the experience.

“When we first arrived at CHOC with Amy, everyone came out of their room as we were coming down the hall,” she says. “They’re were talking to us, patting us on the back. It was like a warm hug.”

And their time at CHOC made an impression on more than Amy’s and Emily’s health: Amy is a nurse at a local hospital, and Emily is pursuing a career as a nurse practitioner.

“For us, it was the nurses who made CHOC home for us and made it manageable and joked with us,” Denise says.

And CHOC’s impression has extended further into the Justiniano family: Inspired by the CHOC child life staff who helped her sisters cope with hospitalization, a third daughter, Sarah, volunteers at CHOC and is pursuing a career in the child life department.