Ringing in the new year cancer-free

Skinnier arms and legs and exhaustion to the point of taking naps. These were the initial signs that left Jamie wondering if there was something wrong with her 5-year-old son, Jacob. Weeks later, the most alarming sign appeared: blood clots in his urine. 

 Jacob was taken to his local pediatrician and it was there a large lump on his lower left abdomen was discovered. Knowing it was something much more serious, Jacob’s pediatrician immediately sent Jacob and his family to CHOC at Mission Hospital. 

 “Our world was changed” 

When Jacob arrived, an X-Ray and a CT scan were ordered to further observe the lump on his abdomen. The results showed a tumor on his left kidney and over 30 small tumors growing on his lungs. DrKenneth Kwon, an emergency medicine specialist, delivered the news that Jacob has Wilms tumor  type of kidney cancer commonly found in young children. Jacob’s cancer was stage 4 and had spread to his lungs. 

“We were devastated,”  Jamie recalls“In just a few hours, our world was changed. 

Jacob was transported via ambulance to the Hyundai Cancer Institute at CHOC Hospital in Orange. Instead of feeling scared or worried, Jacob enjoyed watching Toy Story during the journey alongside his newly acquired rocket ship balloon and stuffed monkey. These small comforts during an anxious situation are one thing that helps differentiate a pediatric hospital. 

 The plan 

“The first time coming to CHOC was extremely difficult,”  Jamie says. “But the nurses and staff could tell we were struggling with the news and they did everything they could to make us feel comfortable. They also explained everything that was happening to Jacob in a way that we could understand.” 

CHOC patient Jacob and his family
Jacob and his family

Dr. Josephine HaDuonga CHOC pediatric oncologist, recommended chemotherapy for six weeks and then re-evaluating the growth of the tumor. Jacob came to CHOC’s Dhont Family Foundation Outpatient Infusion Center once a week to receive his initial chemotherapy. Though the process was hard and challenging, especially during a pandemic, Jacob put on a brave face every time he came in. He eventually created bonds with his child life specialist, nurses in the clinic and Dr. Agnes Horvath, a pediatric oncologist/hematologist at CHOC. 

After the initial six weeks, chemotherapy had shrunk the tumor on his kidney by almost 50%The rest of the tumor could be removed by surgery. 

CHOC patient Jacob during cancer treatment
Jacob flashes a smile behind his mask, as he plays on a tablet in CHOC’s outpatient infusion center.

“The day of surgery was extremely tough on my husband and I,” Jamie says. “Having to experience your young child go through something like this is already hard, but to add a pandemic on top was even harder. However, seeing Jacob’s resilience was what got us all through it.” 

 In the spring, Dr. Peter Yua CHOC pediatric general and thoracic surgeon, successfully removed the rest of the tumor on Jacob’s kidney. However, Jacob was not in the clear just yet; there were still the small tumors on his lungs that needed to be tackled. 

CHOC patient Jacob and Dr. Yu
Jacob and Dr. Peter Yu give a thumbs up on surgery day

For the next 31 weeks, Jacob underwent stronger chemotherapy five days a week as well as radiation that targeted the tumors on his lungs. During that time, there were many trips to the hospital for scans, labs, appointments and a few inpatient staysThere were hard and tough days, but Jacob remembers the simple moments of receiving toys from the Cherese Mari Laulhere Child Life Department and getting his favorite snacks.  

“In those months, we leaned heavily on our family, friends, faith and the expertise of our oncology team,” Jamie says. “They are the ones who helped us see the light.” 

 Bright, ringing moment 

Towards the end of summer, Jacob received one of his last CT scans. The only items that showed were two small spots on his lungs that doctors deemed to be scar tissue. 

Jacob was declared cancer-free. 

A few short days later, Jacob was able to participate in a special tradition to help celebrate the news: ringing the bell. 

CHOC patient Jacob and Dr. Josephine HaDuong
Jacob and Dr. Josephine HaDuong on bell-ringing day

Each patient who completes their last chemotherapy treatment at CHOC is cheered on by nurses, doctors and staff, and has an opportunity to ring a bell to signify the end of a long journey. The plaque on the bell reads: 

 Ring this bell, three times well. 

Its toll to clearly say, my treatment is done, this course is done, and I’m on my way! 

“It was an emotional moment for the whole family,” Jamie says. “We have all been waiting for this day! Jacob could not stop smiling.” 

Since that moment, Jacob has now celebrated his 6th birthday. He’s excited to play sports again and hopefully start school in January. 

“Even though it was an extremely tough journey, there is good that came out of it,” Jamie says. “Jacob knows he’s strong and brave, and we couldn’t be prouder of him.” 

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

Related posts:

CHOC patient fulfills a final wish, shaves favorite CHOC staffer’s head

Daya Tamayo grabbed the electric clippers and prepared to go to town.

“Could you remove the white hair too?” joked Jaime Serna, a CHOC staff member.

Daya beamed as she began to give a buzz cut to Jaime, her close confidant and a patient engagement coach and educator in nursing administration at CHOC.

Jaime was making good on a promise he made to Daya over a year ago, when Daya was diagnosed with stage-four rhabdomyosarcoma, a rare type of cancer that forms in soft tissue.

“Daya, when you get bald, I’m going to get bald with you,” Jaime told her at the time.

Jaime, a longtime CHOC employee, is beloved by many CHOC patients thanks to his years as a phlebotomist who could make blood draws less painful and scary.

Not wanting to wait to lose her hair, Daya cut her own long black hair before starting chemotherapy treatment. After she completed her first round, Daya danced on her bed.

“I’m a warrior!” she shouted.

A brief trip home

After rounds of chemotherapy and radiation following her initial diagnosis, Daya and her mother, Deisy Saldana, her brother Alan, and other relatives who for months had rotated visiting her at CHOC and staying at the Ronald McDonald House returned to their home in Catalina.

Daya, an athletic seventh grader with a love for swimming, basketball and baseball, felt well enough to enjoy ziplining and other outdoor and ocean activities.

Then, her conditioned worsened. Her cancer spread throughout her body, including to her brain.

Daya returned to CHOC.

Making good on a promise

As Daya approached the end of her life, she never forgot the promise Jaime made to her, and she made fulfilling it one of her last wishes.

Jaime recently let Daya, 12, shave his head inside her hospital room.

Daya’s support system

A few days after his haircut, Jaime, sporting a salt-and-pepper buzz cut, visited Daya.

Daya briefly opened her eyes and gave Jaime a thumbs up before closing her eyes again.

Then into the room walked Clare Loper, a child life specialist in CHOC’s Cherese Mari Laulhere Child Life Department, a group that works to normalize the hospitalize environment for children and families. Child life specialists can also offer new diagnosis education and support, and ever since Clare provided diagnosis education to Daya when she was first admitted to CHOC, she has supported Daya’s family.

CHOC patient and child life specialist
Daya poses with Clare, a child life specialist, in a photo taken before the
COVID-19 pandemic.

Soon, three other CHOC associates came to visit Daya: Theresa Coronado, oncology care manager assistant; Racquel Rearos, case coordinator; and Noemi Beas, case coordinator assistant.

They shared fun stories about Daya as they viewed dozens of photos plastered throughout the room, including ones of her quinceanera celebration that was held earlier this fall. The ceremony traditionally marks a girl’s coming of age, which in happy times comes when a girl turns 15.

Daya’s 13th birthday is Feb. 18, 2021.

Daya had plans to make YouTube videos about beating cancer to encourage other young patients. She loved to deliver food to them on the oncology floor.

A diehard Dodgers fan, word about Daya’s cancer battle reached the team’s dugout during the recent World Series. Dodger player Cody Bellinger texted Daya a special video greeting.

“Hi Daya, it’s Cody,” the star player said. “Everyone in the Dodgers clubhouse is rooting for you. We’re going to do everything we can to win this World Series for you, so stay strong, and we’re all rooting for you.”

The Dodgers made good on their promise to Daya, too.

Last wishes

Deisy said she and Daya talked about her last wishes. One of them was not returning home.

“I want to stay with my family at CHOC,” Daya had declared.

Another was cutting Jaime’s hair.

Another was Daya’s desire to be cremated.

“She wanted me to take her in a locket everywhere I go,” Deisy says.

After a long and heroic battle with cancer, Daya passed away in November.

“I knew it was going to happen,” Deisy said of losing Daya. “But I just don’t want to accept it. I don’t ever want to accept it.”

Theresa said Daya has made a big difference in her life. As a last message to Daya, she added:

“You are a warrior, a true definition of a fighter. You are the strongest and toughest girl I know. I love you to pieces.”

Jaime said Daya had the power to instantly lighten the mood in her hospital room.

“She never gave up,” he said. “No matter what happened to her, she didn’t show pain. She taught us all to be strong and not to be afraid.”

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

Related posts:

Navigating an epilepsy diagnosis and surgery: Geni’s story

Life was proceeding right on schedule for self-described “drama kid” Genevieve Masson. The 16-year-old, who goes by “Geni,” went to class, hung out with friends and spent time rehearsing musical theater at her high school.

“It was really a normal, not-so-exciting life,” she says.

school photo before epilepsy diagnosis
Life looked typical for Geni, pictured here in her eighth grade photo, before her first seizure.

But two years ago, when Geni was 14, something changed. A small lesion that had been in her brain since birth began making itself known. One night, she woke up and couldn’t move. She figured she was caught in a moment of sleep paralysis and didn’t give it too much thought.

Things quickly turned far more serious. A few days later, Geni was feeling tired at school and decided to take a nap in her coach’s office. That’s when she had her first full-on seizure.

Geni has no memory of what happened next, but those around her became alarmed as her body shook uncontrollably. A teacher called 911 and the next thing Geni knew, she was in an emergency room.

An MRI revealed nothing, as did visits to pediatricians. But not only did the seizures continue, they were occurring more often. The more severe ones occurred at night, while less noticeable ones were happening many times a day. Ultimately, she was diagnosed with epilepsy, but she wasn’t receiving the expert care she needed at nearby hospitals.

“I remember the day she had her first seizure. It was December 18,” says Susan Masson, Geni’s mom. “By that January, there were a couple more. It got to be about 15 to 20 a day. We knew we needed to be at CHOC. We needed to be at a place where we could be with an epileptologist.”

The Massons felt lucky to live fairly close to CHOC, home to one of the nation’s premier epilepsy centers for young people. CHOC’s Comprehensive Epilepsy Program was the first in California to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, the highest level available. That distinction means that CHOC has the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.

It was at CHOC that the Massons met Dr. Maija-Riikka Steenari. A pediatric neurologist, Dr. Steenari is an epilepsy specialist, also known as an epileptologist.

dr-maija-steenari-epileptologist-choc
Dr. Maija Steenari, pediatric epileptologist at CHOC

“It’s a fascinating field,” Dr. Steenari says of pediatric neurology and epilepsy. “The combination of working with brains and kids together is the best fit for me.”

What exactly is epilepsy? Basically, parts of the brain go haywire and emit unwanted electrical signals that can cause convulsions and seizures of varying strength. As Dr. Steenari describes it, it’s “a clump of brain cells that don’t quite work the way they’re supposed to, or a cluster of cells in the wrong place. They’re really irritable. They’re known to cause trouble.”

Epilepsy can be the result of brain injury, stroke or, in Geni’s case, a slight anomaly that was present since birth.

November is National Epilepsy Awareness Month, a time to remind people that epilepsy is both fairly common — nearly 25% of the population will experience recurring seizures in their lifetime — and it’s often treatable.

Like others diagnosed with epilepsy, Geni’s first option was medication. She was prescribed anti-seizure medicines, but they didn’t work.

Geni undergoes EEG monitoring at CHOC
Geni underwent EEG monitoring at CHOC to measure electrical activity in her brain.

“Medication works about 60 to 70% of the time,” Dr. Steenari says. “But adding more medications doesn’t always work. A second medication only works about 10% of the time. So, can we do something else to help them with their seizures? That’s where surgery comes into play.”

Having seizures meant that Geni was missing a lot of school, would not be able to drive and couldn’t be left alone. But her family and friends rose to the occasion and helped when they could. And Geni did her best to be a regular teenager.

“I was trying to lead a normal life,” she says. “I would still go to rehearsals.”

Geni needed two surgeries, the first one to determine exactly where the problem was. Dr. Joffre Olaya was her pediatric neurosurgeon.

Geni’s hospital room before epilepsy surgery
When Geni spent time at CHOC, her friends made special decorations for her room to show their support and cheer her up.

“We have these grids that we can put on the surface of the brain,” Dr. Steenari says. “We can map where the seizures are coming from within a few millimeters. We could make a very detailed map.”

The lesion was right next to the part of Geni’s brain that controls language. If her surgeon didn’t have an exact spot to operate, she could lose the ability to speak or write. But Geni was willing to take the risk. Each seizure could cause more damage to her brain and Geni wanted them to stop.

“The doctor said each seizure would do damage to my brain,” Geni said. “I don’t like having constant damage to my brain done. If surgery can take me back to where I can’t write or speak well, I was willing to take the chance.”

Geni prepares for surgery
Geni was all smiles leading up to her second epilepsy surgery.

The second surgery came a few weeks later. Doctors successfully removed the lesion, but Geni faced a number of challenges after surgery that her family was told ahead of time were possibilities. Geni lost automatic movement of her right hand, so she couldn’t do with her right hand what other people do without thinking about it. She was 15 at the time, so before surgery, she had long ago mastered writing without thinking about how to shape each letter. After surgery, she knew how letters should look, but she couldn’t make them. She also couldn’t tie her shoes, brush her hair or teeth, button or zip her clothes, or feed herself.  But Geni and her family treated these more like challenges than setbacks, and occupational therapy helped.

welcome home signs epilepsy surgery
To welcome Geni home after epilepsy surgery, her siblings decorated her bedroom.

“A few weeks after surgery, we went to the library and we got some preschool books on how to write. It was quite frustrating, but luckily, my brain still knew how to do it. It just needed to create new pathways. As soon as I did it, it got easier,” Geni says.

workbooks to help regain skills after epilepsy surgery
Preschool workbooks helped Geni re-master writing after epilepsy surgery.

Talking was hard after surgery, too. Geni would know what she wanted to say, but finding the right words took a little more time than it used to.

“Surgery had knocked over her file cabinet of words,” Susan explains of her daughter’s struggles post-surgery, which got better with speech therapy.

Geni’s family was with her every step of the way. It was heart-wrenching for her parents to see their daughter suffer, but they’re proud of how she handled her journey.

“I cry every time I remember how hard this was, and then I laugh at how much Geni thought it was simply annoying what she had to relearn. These kids are fearless little warriors,” Susan says of her daughter. “She’s a bubbly, vibrant, friendly girl. People love her. I don’t think it ever occurred to her that there was another way to manage through this. The limitations of life when you’re living with epilepsy can be staggering, but we didn’t have time to realize them. As soon as it came up, it ended. We got hit by a Mack truck and then it ended.”

Geni and family in 2019 before surgery
Geni and her family on vacation in 2019 before her epilepsy surgery.

Today, Geni has been seizure-free for 14 months. And while her right arm tires easily and she still sometimes has trouble finding the right words to say, someone meeting her for the first time wouldn’t notice.

Geni back on stage after epilepsy surgery
Geni was back on stage a few months after epilepsy surgery.

“I have my driver’s permit and I’m learning how to drive,” Geni says. “That’s where I am right now. I’m working on a project for my film class and also an online play “Clue.”

Geni should continue to improve with time.

“She’s made remarkable recovery,” Dr. Steenari says. “She’ll continue to get better. If we had let those seizures continue, she would have ended up being much worse in the future.”

Learn more about the CHOC Epilepsy Program

Related posts:

Milestone procedure saves preemie with complex heart disease

Baby Hope looked into her mother’s eyes and gurgled.

Four days short of turning 9 months old, wearing a white onesie with the words “Best Gift Ever” on the front, she made more baby talk.

“You’re always a big chatterbox – what are you saying?” her mother, Elizabeth “Becca” Wyneken, said as she smiled and stared into Hope’s blue eyes.

Becca and Hope endured a lot to get to where they are now— a happy and very grateful mom and a relatively healthy 9-month-old baby girl whose light-brown hair is just starting to fill in.

The odds were stacked against Hope when she was born prematurely at 31 weeks and five days, weighing just 2 pounds, 3 ounces. Today, Hope is alive thanks to a team of doctors, nurses and others who cared for her throughout a four month stay on CHOC’s neonatal intensive care unit (NICU) and cardiovascular intensive care unit (CVICU).

Hope was born with a complex heart disease, as well as only one kidney and defects on her right leg and foot. Her cardiac neonatologist, Dr. Amir Ashrafi, pegged her chances of survival at between 20 and 30%.

“Don’t worry, Mom,” Dr. Ashrafi told Becca. “I think we can help her.”

Dr. Ashrafi and Hope
Dr. Ashrafi with Hope, during her stay in CHOC’s NICU

It would take an extensive collaboration between highly regarded cardiovascular interventionalists, some of whom were consulted at hospitals as far away as London, to do so.

And it would involve a high-risk procedure never performed on a baby so small at CHOC.

Grim news at 20-week scan

At 18 weeks pregnant, Becca, a teacher’s aide, went in for a checkup. Blood tests showed her baby had a high risk for Down syndrome and spina bifida.

Two weeks later, a scan of her baby’s anatomy revealed other potential problems.

Becca was told her baby had no kidneys, appeared to have no bladder, no right leg, no lungs, issues with her bowels, and a heart defect.

“I don’t think I stopped crying for the rest of the day,” Becca recalls. “It was horrible.”

Becca couldn’t drive home from the clinic; a friend had to pick her up. That night, Becca had dinner with her mother and aunt. Later, lying beside her mother, Becca cried.

“I can’t believe this is happening,” she said.

She felt a poke in her belly.

“Over and over again, when I got upset, she would poke me,” Becca said.

At that moment, she decided on a name for her baby.

“Hope,” Becca told her mother.

Second opinion reveals true complications

Becca got a second opinion about her unborn baby’s condition.

Her baby was missing a kidney and had a leg defect, she was told. Most seriously, Becca was told, the baby had a defect on her right ventricle, the chamber within the heart responsible for pumping oxygen-depleted blood to the lungs.

Hope’s aorta and pulmonary artery, which carry blood away from the heart, hadn’t developed properly. She had a hole in her heart as well as one in her left superior vena cava, a vein that helps circulate deoxygenated blood back to the heart. These defects caused blood to drain incorrectly; Hope would need a team of doctors to correct the blood flow.

“Being very small with complex heart disease, your options are very limited with what you can do and the timing of any procedures,” said Dr. Ahmad Ellini, Hope’s primary pediatric cardiologist.

There were lots of sleepless nights as Hope’s team of doctors and nurses monitored her closely. Becca was beside her nearly every night.

Dr. Ashrafi and Dr. Ellini consulted with two outside experts, San Francisco-based Dr. Mohan Reddy, who specializes in complex heart disease in small newborns, as well as thoracic and cardiac surgeon Dr. Glen Van Arsdell of Ronald Reagan UCLA Medical Center on the best course of action.

The team of physicians determined that a stent needed to be inserted under a pulmonary artery that was becoming too narrow making it hard for blood to flow through it. Such a procedure is risky, especially on a baby so small.

“In Hope’s case, the idea was if we could open up the area below the valve while not injuring the valve, that would be a home run,” said Dr. Sanjay Sinha, a CHOC pediatric cardiologist who put the stent in Hope’s heart. “Two things made this difficult: she was very small, and we had no stents this size.”

A vendor was able to secure the small stent needed a day before Hope’s surgery.

newborn baby in CHOC’s NICU
Hope as a newborn in CHOC’s NICU

Assisting Dr. Sinha during the procedure was Dr. Michael Recto, medical director of CHOC’s Cardiac Catheterization Lab.

Observing the recently developed procedure, known as valve-sparing RVOT — or right ventricular outflow tract — stent placement, were several cardiologists from CHOC and other pediatric hospitals.

“In some patients, there is very little room for a stent. Hope had just enough room for the stent to be placed,” Dr. Sinha explained. “We knew we had the technical skills and ability to do this, but this had never been done before at CHOC on a baby this size.”

A very scary moment

After the surgery, Hope got seriously ill with a viral infection. At one point, Dr. Ashrafi said, her heart stopped but the team was able to revive her.

In cases like Hope’s, where a newborn’s state of health is fragile, members of her clinical team often must pivot in an instant, making their work schedules long and unpredictable.

Hope was at CHOC for four months before she was able to go home. After that, physicians at another hospital removed the stent, closed the hole in her heart, and corrected her left superior vena cava.

Dr. Ellini, who continues to see Hope at check-ups, is very pleased with her progress.

“She basically has a normal circulation,” Dr. Ellini says. “She needed a pacemaker. Overall, she’s doing great. She’s only on one medication and is gaining weight.”

In fact, she’s up to 13 pounds.

Dr. Ellini says he’s proud of the extensive collaboration that was involved in Hope’s care at CHOC.

“We try to really foster a collaborative team approach in our interventional lab, and this is a great example of that,” Dr. Ellini says. “Having a dedicated neonatal cardiac intensive team of physicians and nurses who are really experts in what they do really was paramount in making sure Hope did well.”

Becca can’t praise Hope’s team at CHOC enough.

“They’re totally lifesavers,” she says. “It was a roller coaster – heartbreaking and exiting. I was pretty much afraid all the time, but they treat you like you are family.”

Learn more about the Heart Institute at CHOC Children's

Related posts:

From CHOC patient to CHOC donor: Katrina’s story

When Katrina, now age 28, was a teenager, she knew about type 1 diabetes because her friend had it – she just never expected to be diagnosed herself.

Katrina’s journey to a diagnosis started after she experienced typical signs and symptoms of type 1 diabetes – weight loss and extreme thirst, among others.

During a cheerleading practice, she mentioned she felt thirsty “all the time” and her mom’s ears perked up. This prompted a trip to her pediatrician, who tested her blood sugar levels. They were 707, and a typical 13-year-old’s levels should have been around 100.

“Being diagnosed with type 1 diabetes at age 13 was life-changing,” Katrina says. “But having my best friend and her brother with type 1 and their mom being a nurse helped me navigate the early days of it and not go in blind.”

She adds that the support she received from her CHOC team in the early days of her diagnosis also made the transition into her “new life” much easier.

“The care that I received at CHOC was above and beyond,” Katrina says. “That time in a girl’s life can be the hardest of all – the stress of high school, hormones and sports to name a few – but it was definitely so much easier with the help of Dr. Clark.”

Her primary pediatric endocrinologist was Dr. Susan Clark, a longtime CHOC physician and nationally-recognized expert in diabetes and endocrinology who passed away in 2017.

“Dr. Clark was the reason I became so successful in managing diabetes. She always had a positive outlook,” Katrina says.

As counting carbs and taking daily insulin injections became her norm, Katrina also began quarterly checkups with the endocrinology team at CHOC.

“I always came to appointments with so many questions. I’m a sweet tooth, and no matter what food I asked my team about eating, they would always come from a place of, ‘Yes you can have anything you want. We will help you figure things out safely,” Katrina recalls. “I was in high school at the time, and if my friends were going to 7-Eleven to get ICEEs, I didn’t want to feel held back; I just wanted to be able to enjoy my adolescence.”

Also notable about her frequent appointments, Katrina says, is that Dr. Clark and her team took the time to truly partner with her and allow her to take an active role in her own care.

“Dr. Clark would address me first – not my mom or dad. She asked her questions to me. ‘How are things going? What do you want to change?’” Katrina recalls. “It’s easy to feel belittled at that age, but Dr. Clark always treated me like an adult and made me feel empowered.”

For those reasons, Katrina considered her CHOC visits not a chore, but “like going to see an old friend.”

Although Dr. Clark primarily managed her care, Katrina became familiar with other endocrinologists and staff at CHOC during her frequent appointments – including Dr. Mark Daniels, medical director of pediatric endocrinology at CHOC.

Dr. Mark Daniels
Dr. Mark Daniels, medical director of pediatric endocrinology at CHOC

CHOC experience inspired her career

Katrina’s career interests were ultimately impacted by her CHOC experience. After college, she joined CHOC as an intern, working on with the research team for CHOC’s endocrinology program.

“My experiences at CHOC were so positive that my career interests flipped to the medical field. Having the chance to work with the endocrinology team that diagnosed and took care of me was like a dream,” Katrina says. “Interning at CHOC confirmed in my mind that if you have a child and something happens – diabetes or anything else – CHOC is the best place you can find. Everyone genuinely cares about the patients and employees.”

As part of her internship, she shadowed Dr. Daniels.

“His rapport with patients and the rest of the medical team was amazing. He knows how to talk to anyone and make them feel empowered, and like what they have to say is important,” Katrina recalls. “He was always so much fun to have a conversation with because I would always learn something new.”

Transitioning to adult care

Katrina’s care was transitioned at age 21 out of CHOC to an adult doctor, which she has found to be a much different experience than the one she had growing up.

“When I was at CHOC, all my appointments felt like open conversations; they never used an accusatory tone. I was empowered to make safe, health decisions. I was part of the solution,” she says. “At my adult doctor, sometimes I think, ‘You don’t have diabetes. You don’t get it.’ But when I was at CHOC, my walls were always down.”

Around that time, she met her now-husband Jake at a fundraiser for PADRE Foundation (Pediatric Adolescent Diabetes Research & Education) – a non-profit that serves thousands of Southern California families living with type 1 diabetes through free education classes taught by CHOC educators and a variety of youth and family programs.

Jake, a firefighter, has been living with type 1 diabetes since he was diagnosed at age 3.

Giving back

Given Katrina’s diagnosis and her family’s philanthropic spirit, raising funds to find a cure was a natural way for the family to give back to CHOC. Starting in 2009, the family of runners organized yearly charity races, dubbed Katrina Kures, to raise money for CHOC researchers who are studying diabetes. To date, the family has raised nearly $200,000.

Katrina speaks at Katrina Kures fundraiser
Katrina addresses the crowd at a Katrina Kures fundraiser

“Part of why we give back to CHOC is that we’ve had such a positive experience there as a family. If we had had a negative experience, we wouldn’t do what we do for CHOC,” says David, Katrina’s dad. “CHOC takes as much of an interest in research as we do. Every time we go to CHOC, you can tell they’re doing something amazing. You can see how CHOC is helping the most vulnerable and the most innocent. We want the money to go toward research for a cure. I hope the cure for diabetes will happen in my lifetime. It’s getting closer.”

Dr. Daniels and his team oversee the funds raised and donated annually by Katrina’s family.

“Dr. Daniels is at the top of his game for research. Whatever he thinks will have the most impact on finding a cure, we’re all in,” says Beth, Katrina’s mom.

The high opinion the Jewell family has of Dr. Daniels goes both ways.

“The Jewell family’s continued dedication to making a better future for people living with type 1 diabetes is truly inspiring. Every time I am around Dave, Beth, their son Jesse, Katrina and Jake, I feel the passion that they have for this cause, and it motivates me and everyone in their presence to work harder, be better and strive for a permanent solution to diabetes. They are my heroes,” Dr. Daniels says.

check presentation
Dave and Beth present a fundraising check from Katrina Kures to Winnie Tran, CHOC Foundation’s director of community engagement, and Dr. Daniels

Finding a cure is especially important to Katrina, as she and her husband will soon expand their family.

“Having the money go toward finding a cure is huge, not just for us, but especially as we’re expecting our first child, it makes the cause so much bigger,” she says. “We’re very proud to be partnered with CHOC and excited about what’s to come.”

Advice to others with diabetes

Living with diabetes for nearly two decades has given Katrina a unique perspective on the disease. She hopes to give other people living with diabetes a message of inspiration.

“Consider what you can control and what you can’t control. Everyone goes through difficult times in life. Your outlook affects the way diabetes affects you,” she says. “Diabetes is a huge hand to be dealt. If I went into it with a negative mindset, I wouldn’t want to do injections, which would affect my blood sugar levels.”

Katrina and Jake hope to show others living with diabetes all that is possible, despite their disease.

“A lot of people’s preconceptions about diabetes come from knowing someone with type 2 diabetes,” Katrina says. “I want people to know that people with type 1 diabetes are just as free with food as you are; there’s just an algorithm running in our minds when we see a plate of food, and we’re making different calculations and decisions than you have to.”

As a paramedic and firefighter, Jake’s job is grueling and physically demanding. Many people didn’t think such a career was possible for him.

“In my paramedic program, we were learning about different medical conditions and they basically said that people with diabetes can’t exercise more than 30 minutes at a time and if they miss a meal they will become hypoglycemic, which isn’t necessarily true,” he recalls. “Diabetes is something that I live with and work with, but it doesn’t run my life.”

Katrina adds that having a strong team around you is essential to maintaining proper health and a positive attitude.

“Because I had a great support system, and the medical care I received at CHOC was so amazing, I was able to live a full life growing up,” she says. “I could do cheer team, earned above a 4.0 GPA in high school, go away to college and manage my diabetes on my own, go on runs and do half marathons. All of these are particularly big accomplishments for someone living with diabetes.”

Start your own fundraiser

Related posts: