By Bud, father of Emma, a CHOC patient; and founder of the Squires Guild, a group part of the CHOC Foundation that connects patient parents with each other while raising awareness and funds for CHOC Hospital in Orange and CHOC at Mission Hospital
My daughter Emma, who is 3 years, 4 months and 8 days old, has a list of diagnoses that read like a medical textbook — I’m sure parents of CHOC can relate — but, her main diagnosis is pachygyria. It’s a congenital malformation of the cerebral hemisphere that results in unusually thick convolutions of the cerebral cortex, giving her brain a smooth appearance and giving my wife and I an excuse to call her a “smooth operator.” We also call her “the Kartoffel” which means potato in German because she looked like a potato when she was little. The name stuck!
Since her condition deals with the brain and is so severe, all of her other body systems are affected. She isn’t ever expected to roll, sit, walk or talk. She struggles with multiple forms of epilepsy and is expected to develop more forms. She also has poor swallow control, which could cause her to aspirate on foods or liquids.
We found out about Emma’s condition when she was 7 months old. She had missed a few developmental milestones and then started having infantile spasms. We are thankful that our pediatrician, Dr. Dawn Bruner, is part of CHOC Primary Care Network. She referred us to, CHOC’s Neuroscience Institute where we ultimately received Emma’s diagnosis.
With all the medical support we had (and still have), it was hard to take in the news of Emma’s diagnoses. Even after three years, it has been a continual process of mourning the loss of the life we thought we were going to have as well as a tremendous exercise in learning to love someone for who they are, and not who we want them to be.
There have been more medical emergencies with Emma than I can count, and often during those times, I feel inefficient, broken. Dads are supposed to protect their children, make it all better and make sure nothing hurts them. But caring for Emma has made me learn that I am just a different kind of dad than what I originally thought I was going to be. I am still strong and effective, and most importantly I have allowed myself to be totally me, just like Emma is totally her.
Emma is fearless. Anything she does, whether it’s laughing, crying, yelling or singing, she does with full conviction. She is the kind of person I hope to be like a little more each day. She is my absolute joy, the light of my life. I am but a humble peasant to my Princess Emma and I don’t mind at all.
It is because of Emma that I am inspired to learn new music, read new books—all based on whether I think she would enjoy them. She has taught me that the more time and energy I put into pushing back against and denying the brutally honest reality that she will not live long or peacefully, the less time and energy I have to truly experience life with her. And as her dad, that’s my biggest joy in life — really living with Emma.
My greatest hope is that she knows that she is loved. I hope she finds her life, however long or short it might be and in whatever way she can, to be rich and meaningful — just like she’s made my life rich and meaningful simply by existing.
CHOC is so grateful to recently have received three very generous gifts that will help CHOC continue to care for more than 185,000 babies, kids and teens each year. CHOC believes that all children deserve a chance at a happy, healthy childhood.
Transformational gift to benefit the pediatric mental health system of care
The gift from the Cherese Mari Laulhere Foundation will:
Endow CHOC’s mental health inpatient center. Opened in April 2018 for children ages 3 to 17, the center is the only inpatient facility in Orange County that offers specialized programs for kids younger than 12. The center will now be named the Cherese Mari Laulhere Mental Health Inpatient Cente
Establish the Cherese Mari Laulhere Young Child Clinic for children ages 3 to 18 who are experiencing behavioral and emotional challenges, mental health issues and school readiness challenges.
Expand CHOC’s Intensive Outpatient Program, a mental health treatment program for high schoolers with moderate to severe symptoms of anxiety, depression or other symptoms related to mental health conditions. The program will be expanded to middle school-aged children.
Advance trauma-informed care, including providing tools to pediatricians to help in identifying adverse childhood experiences, and connecting patients and families with resources.
“Our donations are gifts from our daughter, who brought so much light and love into this world. As someone who advocated for the underserved, Cherese would be very proud of her role in supporting CHOC’s mental health efforts and helping change the trajectory of thousands of young lives,” says Cherese’s parents, Chris and Larry.
An $8 million gift from the Foundation of Caring will help CHOC advance research for a rare lysosomal storage disease, ultimately leading to an improved understanding and more effective treatments.
The gift will support CHOC researchers working to develop next-generation therapies for Pompe disease, a lysosomal storage disease wherein glycogen builds up in the body’s cells and causes life-threatening heart failure and muscle weakness in affected babies. In honor of the gift, the program will be named the Foundation of Caring Lysosomal Storage Disorder Program at CHOC.
The work of Dr. Raymond Wang, a CHOC metabolic disorders specialist and director of the Foundation of Caring Lysosomal Storage Disorder Program, drew the attention of the Foundation of Caring several years ago when Dr. Wang began treating the great-granddaughter of the Foundation’s founder after she was diagnosed with Pompe disease.
With previous support from the Foundation of Caring, Dr. Wang and his team have already made significant strides in its study of Pompe disease, having built a growing research team that’s used CRISPR/Cas9 technology to edit the genome to create animal models of Pompe disease. The Foundation of Caring’s gift will allow Dr. Wang and his team to expand upon this work and use CRISPR to cure Pompe disease and lysosomal storage disorders.
“We are so pleased to support the important work of Dr. Wang and his team at CHOC to help find better treatment or, even better, a cure for Pompe disease for patients affected by the condition worldwide,” says the Foundation of Caring Board of Directors.
Newborn babies requiring critical care have gained a big ally in the William, Jeff and Jennifer Gross Foundation. A recent $2 million gift to the neonatal intensive care unit (NICU) on CHOC’s main campus in Orange rounds the Foundation’s support of CHOC’s neonatal services to $7 million in the past year.
Many hospitals offer intensive care units but only a select few are rated by the American Academy of Pediatrics as Level 4 – the highest rating available – and even fewer are ranked among the best in the nation, according to U.S. News & World Report. CHOC’s program features three NICUs, a team of board-certified neonatologists and special units for the smallest preemies, infants who need complex surgery, and babies who have neurological and cardiac concerns.
“CHOC’s neonatal services are unlike anything else offered on the West Coast, providing the highest levels of care and tremendous hope to families in the region. We are honored to continue our commitment to CHOC and the care of newborn babies,” says Jeff Gross.
Illness and injury shouldn’t dim the brightness of the holidays for kids. Help us preserve the magic of childhood – year-round – for our patients by supporting CHOC the following ways this holiday season:
Donate: Give back through a one time, monthly or annual gift or make a tribute donation in honor of someone special. Donate now: www.choc.org/donate
Purchase KidsArt: Give one-of-a-kind greeting cards or gifts designed by CHOC patients. Shop now. www.choc.org/kidsart
By Dr. Mery Taylor, pediatric psychologist at CHOC
Dr. Mery Taylor, pediatric psychologist at CHOC
By this point in the COVID-19 pandemic, many children have experienced disappointment about missing out on birthday ...
Amid stay-at-home orders, remote learning and other changes caused by the COVID-19 pandemic, many families are faced with finding different ways to celebrate the holiday season than they’ve done in ...
Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.
“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”
Brodie’s journey to a diagnosis
Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.
The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.
“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.
The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.
During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.
Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.
They found a tumor.
Another starting line
“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”
“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”
Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.
“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.
The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.
A doctor unlike the rest
Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.
“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”
Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.
“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”
Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.
Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.
“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”
Finding a familiar face at CHOC
While Brodie was admitted to CHOC Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.
Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.
Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.
“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”
Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.
Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.
“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”
Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.
“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”
With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.
Lucie, age 13, is no stranger to performing. The budding pianist started playing piano when she was 6 years old, won her first local competition at 7, first international competition at age 9, and currently takes private lessons in addition to attending a performing arts school.
Earlier this year, Lucie’s piano teacher encouraged her to perform in a solo recital for the first time. Lucie’s first thought wasn’t about which songs she would perform or if she would feel nervous on stage — it was about turning the recital into a benefit concert.
Lucie had briefly been a patient in the CHOC emergency department when she was a baby, but her connection to CHOC runs deeper. Her mom Carolyn has been a clinical pharmacist at CHOC for a decade.
“Lucie has grown up hearing about exciting new treatments we’re continuously offering at CHOC, the new technologies we get in the pharmacy, and the important work done for children in our community,” Carolyn says.
Like many people in her community, Lucie has known family members and friends who have received care at CHOC as well.
All of that made Lucie’s decision to choose CHOC as a beneficiary of her concert an easy one.
“I’m grateful to CHOC for treating my friends, relatives, neighbors, and classmates, and I wanted to give back. And this was the perfect opportunity,” Lucie says.
Her decision to give back to CHOC made her mom very proud.
“As much as I wanted Lucie to choose CHOC, I felt it was important for her to choose a non-profit that was close to her heart. So, when she told me she chose CHOC, I was beyond thrilled,” Carolyn says.
Lucie’s concert raised more than $2,000 in support of KidsCARE, a fund that provides unrestricted financial support to meet the greatest needs of the hospital.
Throughout this experience, Lucie has gained a deeper understanding of the importance of giving back, her mom says.
“When children learn the importance of philanthropy, it helps instill altruistic values and helps them develop empathy for others,” Carolyn says. “By giving back, they learn they can make a difference in society, even at a young age. This experience reminded Lucie of everything positive in her life. She gained an important lesson in humanity that will be helpful for the rest of her life.”
Lucie hopes to inspire others to give back.
“To any other young person who wants to give back, I would say don’t be intimidated. It may seem overwhelming to start your own fundraiser, but it’s not. It doesn’t have to be this grand event; it could be something as simple as a neighborhood bake sale or lemonade stand,” she says. “Think of an activity you will enjoy doing. Enlist your family members and friends to help out. Take advantage of social media to spread the word about your fundraiser. Regardless of how much you raise in the end, know that what you did is important and makes an impact for the patients at CHOC.”