Big Sister Gives Back to Honor CHOC Children’s

Lily’s big sister, Makenna loved her before she was even born. She was actually the one who chose Lily’s name. Their bond only grew stronger when Lily was born with a rare chromosomal abnormality requiring specialized treatment and extra help at home.

Lily and Makenna
Lily and Makenna

“Even though Lily is different than Makenna and her brother, Ethan, they just see her as their sister,” says mom, Danielle. “They’ve helped Lily learn sign language and practice pronouncing words.”

Lily’s entire family has been involved in her care from day one. Makenna, age 11, would regularly tag along to Lily’s physical and occupational therapy sessions. She was keen to learn how she could help take care of her sister. She watched closely as physical therapist Cathy Lopez taught Lily how to move her body, and occupational therapist Lauren Newhouse taught her how to eat solid food (her favorite is avocado).

Seeing the way CHOC’s rehabilitation services team cared for Lily and the progress she made in therapy inspired Makenna to give back.

Makenna’s fundraiser

When Makenna’s school hosted a fair for students to showcase causes important to them, she chose to honor CHOC. She and a few friends watched YouTube videos to learn origami and created dozens of animal and emoji-themed bookmarks. She quickly sold out of them and donated the proceeds to the rehabilitation department at CHOC.

Lily backpack

“Raising money for CHOC is the least I can do to thank them for taking such good care of my sister,” Makenna says. “Whenever we are there for an appointment, all the doctors, nurses, therapists and security guards are so nice to us.”

Organizing this fundraiser has inspired Makenna to continue her philanthropic streak.

“It was feels good to do it and it was so easy. It makes me want to do more to raise more money for CHOC,” she says.

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Lily and Makenna present a Makenna’s fundraiser proceeds to physical therapist Cathy Lopez.

Lily’s diagnosis and early days

When Danielle and her husband, David, found out they were expecting their third child, they were thrilled. A few months into Danielle’s pregnancy, a blood test showed that Lily had Turner Syndrome, a genetic condition affecting a female’s growth and fertility. That turned out to be a false positive, but a follow-up amniocentesis correctly diagnosed Lily with Mosaic Trisomy 12, a rare chromosomal abnormality about which not much is known.

Lily was born full-term via C-section at a local hospital. Immediately after birth she had trouble breathing and turned blue, and she was quickly whisked away to that hospital’s neonatal intensive care unit (NICU).

Lily needed a ventilator to help her breathe. She also required use of a CPAP, also known as continuous positive airway pressure, which helped keep her airway open. Danielle pumped her breastmilk so Lily’s care team could nourish her through a feeding tube.

Just outside the hospital, CHOC geneticist Dr. Neda Zadeh was starting to make her way home for the day when she heard about Lily’s condition.

“Dr. Zadeh was on her way out, but she turned around and came back to the hospital to run more tests and get a better idea of what was affecting her,” Danielle recalls. “Dr. Zadeh is amazing.”

In the first few days of Lily’s life, her parents weren’t sure if she would make it or not. When she was 3 days old, she was transferred to CHOC’s NICU for a higher level of care.

Lily spent the next 24 days in the NICU. When she learned how to breathe and eat on her own, she was ready to go home for the first time.

While the family spent much of their daughter’s first month in the hospital, NICU nurses made sure the family didn’t miss out on their first holiday together — Father’s Day. With her nurses’ help, Lily created a special Father’s Day craft for David using her footprints.

These days, Lily sees a mighty brigade of pediatric specialists at CHOC on a regular basis. Although not much is known about her Mosaic Trisomy 12, her care team remains fully committed to ensuring she is safe and healthy. In addition to Dr. Zadeh, Lily is under the care of neurosurgeon Dr. William Loudon, endocrinologist Dr. Timothy Flannery, and otolaryngologist Dr. Nguyen Pham. She also sees a neuro-ophthalmologist at UC Irvine.

Danielle is proud of the progress Lily has made during therapy at CHOC and seeing how that progress sparked Makenna’s giving spirit makes her proud as well.

family

“Makenna probably doesn’t realize this, but Cathy and Lauren at CHOC really cared for our entire family, not just Lily,” Danielle says. “The entire rehabilitation team at CHOC was incredibly supportive to our entire family. They were the weekly and sometimes daily reminders that we could do it. They impacted our entire family in a way that words simply cannot express. When we look back on Lily’s first years, they are in our memories and always will be!”

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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.

daniel-choc-neurosurgery-patient-to-choc-volunteer

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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