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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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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