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.

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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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The Power of Music Therapy: Darlyn’s Story

On a sunny day in the middle of spring, Darlyn was born at St. Joseph Hospital in Orange. She was immediately transferred across the street to the level IV neonatal intensive care unit at CHOC Children’s. As the spring turned to summer, and summer gave way to fall, the NICU remained Darlyn’s home as she battled with a myriad of health challenges.

Before she was born, prenatal ultrasounds showed that Darlyn had a congenital diaphragmatic hernia (CDH), a rare birth defect where a hole in her diaphragm allowed organs from the abdomen to move into the chest. After birth, she was diagnosed with bilateral CDH. Approximately one in every 2,500 babies born are diagnosed with CDH. Of those, only one percent have a bilateral CDH. Darlyn’s parents Mirian and Edgar understood the seriousness of this diagnosis and weren’t sure if their baby would survive the pregnancy, or pass away shortly after birth. In her first week of life, Darlyn underwent her first in a series of surgeries.

“For the first two or three weeks of her life, our main goal was survivorship,” recalls Edgar.

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Darlyn and her father Edgar in the NICU.

Darlyn also has underdeveloped lungs (a condition known as pulmonary hypoplasia), which makes it a struggle to breathe on her own. She lacks a fully formed esophagus, meaning she also can’t swallow or eat on her own either. During Mirian’s pregnancy there was a build-up of amniotic fluid due to Darlyn’s duodenal atresia (a blockage of her small intestine), so the baby was especially active and moved around constantly. The only thing that calmed her down was playing music ― everything from lullabies to classic rock did the trick. Knowing their baby loved music even before she was born, her parents gave her the middle name Melody.

“From day one she has been the melody of our lives,” Mirian says.

Darlyn and her mother in the NICU at CHOC Children's
Darlyn and her mother in the NICU at CHOC Children’s.

Music has continued to play a big role in the now seventh-month-old’s life. Daily music therapy sessions conducted in tandem with occupational therapy sessions have helped her make progress on clinical goals such as developing fine motor skills. Other goals she’s already accomplished include standing for longer periods of time, reaching for and grasping toys tightly, and visual tracking.

A music therapy session conducted in tandem with occupational therapy in the NICU.
A music therapy session conducted in tandem with occupational therapy in the NICU.

“Before starting music therapy, Darlyn wasn’t very active and she often lost oxygen very quickly,” Brie says. “This baby is a new baby since experiencing music therapy.”

Environmental music helps create a soothing space to teach patients to calm themselves in an over-stimulated environment, which can help them heal, even after they go home.

“From the outside, it may look simple, as if I am just serenading a baby in a soothing tone, but I’m working hand in hand with their developmental team to help them reach clinical milestones.”

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A music therapy session conducted in tandem with occupational therapy in the NICU.

Darlyn’s care team is vast. Her medical team at CHOC sees music therapy as a trusted partner in helping Darlyn achieve her clinical goals. Her support system includes: Dr. Irfan Ahmad, a neonatologist; Dr. Peter Yu, a pediatric general and thoracic surgeon; and pediatric specialists from gastroenterology pulmonology, cardiology, infectious disease, the NICU developmental team (made up of occupational, physical and speech therapists), and a dedicated team of NICU nurses.

“We love and appreciate our NICU nurses more than we can even put into words,” Mirian says. “Without them, this journey would be more difficult and more heartbreaking. They take care of Darlyn as if she was their own baby girl.”

Jamie, a NICU nurse, celebrates July 4th with Darlyn.
Jamie, a NICU nurse, celebrates July 4th with Darlyn.

“Music helps calm down infants,” says Dr. Ahmad. “During their fetal life, they are exposed to rhythmic sounds, such as their mother’s heartbeat. They get accustomed to these sounds, and after birth when they hear music with a similar rhythm, they like it. Older neonates become more interactive with rhythmic music, and they look forward to their sessions.”

Darlyn isn’t the only one who has been looking forward to her daily music therapy sessions― her mom does too. After each session, her developmental team calls Mirian to give a full report on her occupational therapy progress and disposition.

Her parent’s high level of engagement is deeply appreciated by her care team.

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Darlyn’s parents chose a Snow White theme for her first Halloween, which she celebrated in CHOC’s NICU.

“Darlyn’s parents are amazing. They ask good questions, and they trust us to take good care of their little girl. It would be hard to tackle this level of complexity without their trust,” says Dr. Yu. “We still have a long road ahead of us, and maybe more challenges too, but they are resilient, just like their daughter.”

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Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

A few months into her time in CHOC’s NICU, Darlyn moved into the brand new 36-room unit with all private rooms. Her family has loved having their own private space.

“In the old unit, it could get noisy and we didn’t feel like we had any privacy. Now, we get to decorate her room and make it feel more like a nursery,” says Mirian.

Darlyn's parents have decorate her private room in the CHOC Children's NICU to feel more like home.
Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

The family has displayed notes of encouragement from loved ones and her favorite nurses- including nurse Jamie, who taught Darlyn how to stick out her tongue. They’ve even hung up the outfit she’ll wear when she finally gets to go home.

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Darlyn’s parents have hung up the outfit she’ll wear when she finally gets to go home from the NICU.
Learn more about music therapy at CHOC

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South Dakota Family Finds Success with CHOC’s Feeding Program

At every pediatrician’s appointment, Christine Egan dreaded putting her daughter, Layla, on the scale.

“I knew her little growth curve. She was below the 0 percent growth curve every single time,” Christine recalled.

Because of a combination of failure to thrive, gastroenteritis and food allergies, Layla received a feeding tube at age 15 months.

The tube helped her get the nutrients she needed and she’d pick up on growth. With a handle on the other underlying issues, the family would begin feeding therapy. But try as they might, the Egans could never reach a place where life without a feeding tube seemed within grasp.

“Other parents think they understand but they don’t,” Christine said. “Picky eaters don’t eat as much or as much of the variety as you’d like them to, but they’re still growing. Layla would eat some things, and it wasn’t a bad variety, but it was two or three bites and say she was done. There was nothing you could do to get her to eat more.”

Finally, when Layla was 5, the family turned to CHOC Children’s multidisciplinary feeding program. In January 2013, Christine and Layla traveled from Sioux Falls, S.D., to Orange, Calif., to undergo an intensive 19-day program where Layla would learn how to eat and Christine would learn how to support her.

The program was a success, and about six months after returning home from CHOC, Layla’s feeding tube was removed. Life has since changed dramatically for the Egans.

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“The biggest thing was when we could just have a meal and there was no drama. We finally had the kind of meals that we take for granted now,” Christine said. “Before, there would be constant drama. With three meals a day plus two or three snacks, it was five or six battles a day.”

Today, Layla is 9 years old and enjoying fourth grade. She’s doing well and enjoying food, and Christine no longer worries about how much she’s eating.

“She’s going to eat what she needs, and some days it’ll be more and some days less,” she says. “And at dinner time, we can sit down as a family. It’s so simple.”

Learn more about CHOC's feeding program

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Not Fighting Cancer Alone: Sydney’s Story

By Sydney Sigafus, cancer warrior and CHOC Children’s patient

As a teenager and an athlete, my life revolves around sports. As a sophomore at Foothill High School, I’m one of the sports anchors for our school newscast. I’m also a member of the JV girls’ basketball team, which has always been like a second family to me.

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Before fighting cancer, Sydney was a member of her school’s JV girls’ basketball team.

During last year’s summer league season, I started to have pains on the right side of my back. I thought I had simply pulled a muscle, so I told my mom about it. Off we went to the pediatrician, who sent us to get an MRI. We were referred to Dr. Nader Nassif, an orthopedic surgeon who sees patients at CHOC. He saw a spot on my upper femur that was small at the time, but that he wanted to keep an eye on. He said it could be a number of things— one of those being cancer— but he didn’t initially think that that’s what it was because of where the spot was on my bone and what it looked like. He told us to come back in three months for more scans.

By our next appointment, the spot had grown by a few millimeters, so we did a biopsy, which is a test that’s performed to examine tissue or cells from a certain part of the body. That test showed that the spot on my femur was cancerous. Dr. Nassif was surprised, since most teens with Ewing’s sarcoma have it in the knees and it grows very quickly, but mine was near my hip and grew very slowly.

Meeting my care team at CHOC

Dr. Nassif told my family that we were going to be working with Dr. Elyssa Rubin, a pediatric oncologist and director of the bone and soft tissue sarcoma treatment program at CHOC. I learned quickly that Dr. Rubin is not only your doctor but also your friend. She would come into my room and not only ask me how I was feeling, but she wanted to know if I was able to see my friends that weekend, if I had made it to the basketball game at school, or if I had seen the latest movie that just came out. I always felt like she cared about me not just as a patient, but as a person. She laid out the game plan very clearly for me and my parents and answered all the questions we had (and some that we asked over and over again). My treatment plan called for six rounds of chemotherapy before surgery and eight rounds after.

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“I learned quickly that Dr. Rubin is not only your doctor but also your friend,” Sydney says. “I always felt like she cared about me not just as a patient, but as a person.”

I was lucky to have the very best nurses. They were amazing throughout my entire journey. It stinks to have nausea or not be able to do something with my friends because my counts were down, or even be able go to school — but my nurses, especially my nurse practitioners Liz Torok and Jody Pathare, have made something that seems so tough, a lot easier.

Physical therapy has played a big role in my life after surgery. My physical therapist Robin Beauregard is a two-time Olympic medalist, so as an athlete, she helps me connect with my treatment. She’s no-nonsense and very witty like me, and it makes me really look forward to physical therapy sessions.

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Thanks to having an Olympic medal winner on her care team, Sydney was able to look forward to physical therapy sessions.

Another group that has made my journey so great has been the child life team. I can’t say enough good things about them, especially Kara, the child life specialist who works with adolescent and young adult patients. She heard I loved sports, and on day one of treatment, she brought me a huge basket filled with swag from my favorite sports teams and even a basketball hoop for my room. I assumed it was a one-time thing, but she has come to visit me every single time I’ve been at CHOC for treatment. She even came into the operating room with me when I needed an epidural for my surgery because I was scared and my parents couldn’t come into the OR with me. It was hard for my parents to be in the waiting room while I was in the OR, but knowing that I had Kara by my side made them feel so much better. During surgery, my tumor was removed and a prosthesis was put in for my upper femur. After finishing eight more rounds of chemotherapy after surgery, my scans confirmed that I was cancer free!

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During her treatment, Sydney quickly bonded with Kara, the child life specialist who works with adolescent and young adult patients.

Every single person I’ve met at CHOC has been amazing — especially the woman who cleaned my room. She called me princess!

Making the hospital feel like home

Not only has child life supported me on my journey, but they’ve also helped make the hospital feel less like a hospital. This goes beyond bringing an Xbox to your room to take your mind off your treatment. It starts with the way CHOC looks  can you imagine receiving treatment in a place that just had white walls and a white floor? CHOC is the opposite. It’s colorful. It has gardens you can go outside and sit in. There are playrooms everywhere. There’s a lounge that’s just for teens. I’m not musical or artistic, but for the patients that are, they’ll bring you instruments and introduce you to a music therapist, or bring you drawing and painting supplies.

Finding support in unexpected places

When I started this journey, I felt so alone. What are the chances I would know another teenager that is going through this? I soon realized that I did have someone who understood what I was going through, someone that I looked up to even before I was diagnosed with cancer. When I was a freshman, there was a senior at my school who was fighting osteosarcoma (a type of bone cancer) in her knee. Claire was an athlete like me before she was diagnosed with cancer. Our school recognized her as Homecoming Queen during her treatment, and I remember watching her use crutches during the ceremony where she received her crown. At the time, I thought she was so amazing, and I was really moved by her story. Six months later I received my own diagnosis. Claire immediately reached out to me, met me at the hospital and has been offering me nonstop support ever since.

Another pleasant surprise was getting to meet the doctor who delivered me 15 years ago! Dr. Gigi Kroll is a member of the CHOC Children’s Foundation Board of Directors, and I got to meet her at a fundraising event for the Hyundai Cancer Institute at CHOC. My mom had a complicated delivery when I was born, and I’d heard a lot growing up about how wonderful her doctor had been. It was so cool to meet her in person, and nice to know that she’s part of making CHOC the amazing hospital it is today.

Choosing to be positive

I’ve always been a happy and positive person, but I’m also realistic. Of course there’s going to be times on this journey when you’re sad, because who doesn’t get upset about cancer? But I’ve learned that if you’re sad, it’s going to make a bad situation ten times worse.

Even with all the support around you, it’s important to realize that there is only so much other people can do for you. There comes a point where you have to do things for yourself and choose to be positive.

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Red Nose Docs were a welcome distraction and source of positivity during Sydney’s treatment.

I try to be positive all the time. I have a great support system, which includes my family, my friends, my doctors, my nurses and child life.

On the day of my surgery, I set a goal to be able to walk back into school for the start of my junior year. A few weeks ago, I accomplished that goal! I’m starting to think about colleges, and I’m looking to study kinesiology. I want to become a pediatric physical therapist and an athletic trainer.

I’ve learned a lot from this journey. My family and I have been incredibly blessed by my care team and other families who have taken us under their wing, and I want to repay them by doing whatever I can to help motivate other patients who may be struggling to stay positive.

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

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CHOC Patient Benefits from World’s Smallest Pacemaker

Sofia Rodriguez and CHOC Children’s cardiologist Dr. Anthony McCanta are making medical history. The petite 12-year-old recently became the smallest and youngest patient to receive the Micra® Transcatheter Pacing System (TPS). The innovative physician, who specializes in pediatric electrophysiology, joins an elite group of doctors in the world who have implanted the device, and is likely the first to do so in a child.

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The Micra® Transcatheter Pacing System is about the size of a vitamin.

About the size of a vitamin, Micra TPS, which was approved by the Food and Drug Administration last year, provides the most advanced pacing technology at one-tenth the size of a traditional pacemaker. And unlike traditional pacemakers, the device does not have cardiac leads, which are the wires that carry electricity from the pacemaker to the heart and the other way around. This activity occurs between 100,000 to 200,000 times in most children, eventually putting a strain on the leads. The leads can then break or stop working properly, requiring a new device to be implanted.

In addition to being leadless, the Micra TPS is small enough to be delivered through a catheter and implanted directly into the heart instead of a surgical “pocket” under the skin. This offers patients a safe alternative to conventional pacemakers without the complications associated with leads — all while being cosmetically invisible.

Sofia’s story

Diagnosed shortly after birth with a particularly complex form of tetralogy of fallot, a rare and serious heart condition, Sofia had her first open-heart surgery before turning 1 month old and a second, to implant a traditional pacemaker, when she was 6 months old. Abdominal surgery followed, as did a diagnosis of DiGeorge syndrome, a chromosomal disorder that affects the development of several body systems.

Sofia tackled each health challenge with a fierce determination to survive and, more than that, to enjoy her childhood. Her parents and the team at the CHOC Children’s Heart Institute supported her every step of the way, equally committed to her quality of life.

When the pre-teen needed a new pacing system (the cardiac leads from the first device had broken), Dr. McCanta advocated for the Micra TPS. He knew the benefits it would bring to Sofia, and other CHOC patients.

“The immediate benefit to Sofia is that she does not have another scar on her upper chest. The long-term benefit is she has no cardiac lead in her vein that could break, become infected or cause a blood clot,” explains Dr. McCanta. “When you consider the course of her entire life, the benefit of reducing complications of pacing is almost immeasurable.”

Sofia’s parents are proud of the part she played in the medical milestone. “She’s always been special, and here’s just one more thing that demonstrates how special she truly is,” says Sofia’s dad, Edgar. “We are thankful for people like Dr. McCanta and so impressed with the new technology. We feel truly blessed.”

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Sofia and her dog, Yoda

When she’s not on her computer, Sofia loves watching videos and listening to Latin music. She’s outgoing with lots of friends and a bright future ahead of her.

Learn more about the electrophysiology program at CHOC

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