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.

cahty-lily-makenna-donation
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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Restoring a Happy Childhood: Rylee’s Epilepsy Journey

A teacher years ago bestowed an apt nickname on Rylee Christe: Smiley Rylee.

“She’s a very social, happy child,” says her mom, Sara. “She got that name from her preschool teacher. It just stuck forever. She’s always smiling.”

But despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. And Sara wanted nothing more for her young daughter than to enjoy her childhood without this burden.

The problem

In 2013, a pediatrician diagnosed a 4-year-old Rylee with complex partial seizures. Suddenly, Rylee’s mouth would twitch and cause saliva to bubble. She’d be unresponsive to questions. While the family awaited an appointment with a specialist, the seizures quickly increased in frequency, sometimes up to 30 a day.

One day, Sara knew she couldn’t wait any longer and took Rylee to an emergency department. An electroencephalogram, or EEG, detected abnormal brain activity, confirming the pediatrician’s diagnosis of complex partial seizures. Imaging also revealed a lesion on Rylee’s brain.

An odyssey to stop the seizures began. Doctors ordered multiple tests and prescribed several types of medications. But the seizures continued. They moved to another hospital and found some temporary relief, but the seizures began again.

Finding a guide

The Christe family’s next stop was CHOC Children’s, where they saw Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program.

dr-mary-zupanc
Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program

Dr. Zupanc, who has worked with thousands of patients with epilepsy throughout her career, understood exactly how distressing an epilepsy diagnosis can be for families and how debilitating seizures can be.

“We had been through the woodwork trying to get to where we are now, to find the amazing doctor that we needed,” Sara says.

A plan at last

First, Dr. Zupanc ordered long-term video EEG monitoring of Rylee’s brain activity. Another round of imaging revealed another lesion, this time in the left frontal lobe.

Dr. Zupanc then worked to get Rylee’s seizures under control, trying two medications previous care teams hadn’t. After the seizures reduced to about one or two a night, the Christe family headed home.

Next, Dr. Zupanc set out to stop the seizures for good. It was clear though that Rylee would need more than medication. Dr. Zupanc raised the prospect of brain surgery.

“At first, I was hesitant to move forward because any mention of surgery for your child is terrifying,” Sara says. “But brain surgery? Come on.”

But Dr. Zupanc explained to the family that evidence shows more than 70 percent of patients with seizures may benefit from surgical intervention; that children respond and recover well from surgery because of the plasticity of their young brains; and that surgery should be considered sooner than later.

Taking action

The family agreed to explore the option, moving forward with subsequent testing, exams and lab work needed to determine if Rylee was indeed a surgical candidate. After reviewing the results, a team of CHOC specialists agreed that she would benefit from surgery.

rylee-epilepsy-surgery

Next for the Christes was a brain mapping session at CHOC Children’s Hospital. During the procedure, Dr. Joffre Olaya, a pediatric neurosurgeon who is specially trained in epilepsy surgery, opened Rylee’s skull and placed an electrical grid on her brain. Later, Dr. Zupanc would record Rylee’s seizures to pinpoint the seizure focus. She also stimulated the electrodes on the grid to determine the location of Rylee’s motor area and speech and language center in the brain.

Three hours of testing confirmed Dr. Zupanc’s suspicion that Rylee’s seizures were originating from the left frontal lobe. The physicians were confident if Dr. Olaya removed the lesion there, the seizures would stop.

The procedure wasn’t without risks though. Drs. Zupanc and Olaya cautioned Sara that the surgery could leave her daughter with some impairments like a facial droop, speech problems and even some paralysis.

Sara and Rylee weighed the risks with the benefits of a childhood without seizures and decided to move forward. Three days later, she underwent a successful surgery with no complications.

Back to being a kid

After four days of recovery at the hospital, Rylee and Sara headed home. The next week, Rylee returned to school on an adjusted schedule and was begging her mother to use her roller blades and ride her bicycle.

Now, about six months past her surgery, Rylee, 9, hasn’t had a single seizure. She remains on medication, but it’s likely her dosing may decrease after a few years.

Life for the Christes has changed dramatically.

“Quality of life has improved so much for the whole family,” Sara says. “I can sleep at night. It feels like I haven’t slept in five years.”

rylee-after-epilepsy-surgery

And Rylee, who will likely remain on medication for the rest of her life with close following by her physicians, is in fourth grade and back to enjoying her childhood.

“She loves to dance and sing, and she can remember the words to every song she sings,” Sara says. “She loves to swim and ride bikes, and her favorite thing in the world is mermaids.”

Learn more about the CHOC Epilepsy Program

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Living with Scoliosis: Jennifer’s Story

By Jennifer Schultz, CHOC Children’s patient

At 8 years old, I was diagnosed at the CHOC Children’s Orthopaedic Institute with idiopathic scoliosis. As a young child, I was not aware of the significance of this lifelong three-dimensional curvature. My baby blue night brace arrived two weeks later. It was a warm insulator around my spine during chilly winters, but during summers it turned into a sweltering, body-hugging, coil-wrapped anaconda. Over the years, wearing my brace was simply part of my nightly routine; the only modification was the arrival of a pink brace, a green one, and finally a gray brace, each increasing in size.

I experienced a major growth spurt – and an increase in the curvature of my spine – in middle school. Up to this point, playing tennis and the piano had been my go-to activities. Even though my doctor disclosed that tennis had no negative impact on my spinal curvature development, my family decided I should discontinue my daily practices, as well as play the piano fewer hours each week. We decided swimming would be a balanced and safe exercise. I started swim year-round with a local club, SOCAL Aquatics, to improve and strengthen my core and back muscles. I was not a big fan of the cold water, especially during the chilly winter nights, and this resulted in my wearing an embarrassing wetsuit for every practice. Quitting tennis and starting swimming were very difficult to accept, but I knew if I continued swimming, I would benefit in the end.

jennifer-swimming-scoliosis
After a growth spurt prompted an increase in the curvature of her spine, Jennifer took up swimming in place of playing tennis and piano.

Wearing a brace and swimming year-round have helped maintain my fixed curvature. A few years ago, Dr. Afshin Aminian, medical director of CHOC’s Orthopaedic Institute, directed me to the CHOC website, which contained several sets of exercises for patients with scoliosis. I started doing these stretches every day in my room for about 20 minutes. I also began SCHROTH physical therapy to improve posture and reduce progression of the curve. Doing daily breathing and walking exercises are very therapeutic and soothing to my mind and body. With enough practice and concentration, I can utilize these routines in the future should I start to feel discomfort in my back.

Two years after my growth spurt, my doctor prescribed a day brace. The shift from a night brace to a day brace proved to be even tougher on me both physically and mentally, especially since I was required to wear my brace to school. Not only was this a little humiliating, but it was very difficult to sit at a desk and maneuver around campus. The stretch marks, bruises and rashes on my back didn’t make my diagnosis any easier to accept. However, this brace was the only tool preventing my back from succumbing to a more dangerous fate: surgery. Always trying to maintain a more positive outlook has been tricky, but it has helped me minimize some of my discomfort and understand my condition could be much worse if I did not have access to a medical brace.

When I entered my freshmen year of high school, I noticed several of my friends were also wearing spinal day braces. Loose clothing became the norm for us, articles that would discreetly conceal the uneven protrusions of our braces. I empathized with my friends about some of the humiliation and discomfort of scoliosis. This was what motivated me to start a high school health club to promote healthy lifestyles and raise awareness for various health issues, including scoliosis. My vision included fundraising for orthopedic research in local hospitals and POSNA (Pediatric Orthopedic Society of North America). We sold Jamba Juice BOGO cards. Our funds helped a research project on the physiological effects on adolescent scoliosis patients. This study revealed that most teenagers with scoliosis have reduced self-esteem due to their physical appearance, and they do not share these feelings with their parents. In addition, we donated $750 to Dr. Aminian’s current research at CHOC, which is focused on utilizing ultrasound for early scoliosis detection and monitoring. This research is personal to me since I was exposed to X-rays two to three times a year to measure my spinal curvature. The ultrasound is less harmful to patients’ health, and early detection is key to prevent progression.

jennifer-scoliosis-high-school
After she started high school, Jennifer formed a health club to promote healthy lifestyles and raise awareness for various health issues, including scoliosis.

After eight long years of wearing a back brace, my spine has finally stabilized at a solid 45 degrees. My four braces currently sit inside my closet, each representing a challenge I was able to overcome. Wearing a brace was my greatest hardship. Avoiding back surgery was my greatest triumph. Persistence and dedication are key; keeping the brace on long as possible is the smartest thing to do. I learned that the opinions of my peers should be low on the priority list; my well-being is far more significant. What I realized most is that my brace ultimately made me mentally and physically stronger. Scoliosis made me understand how I could make a difference by supporting the cause and my peers.

Fundraising for scoliosis research was an unforgettable experience that allowed me to assist my friends and other patients with scoliosis. As I learned more about orthopedic research, I wanted to delve deeper into biological laboratories to understand and discover the underlying cause of scoliosis. I recently earned an opportunity to work in a local lab, where I assisted in the study of cell polarity and craniofacial development in zebrafish. Currently, the lab is using zebrafish with scoliosis to study potential mutants or mechanisms that cause idiopathic scoliosis. Although recent publications may offer reasons for the cause of congenital scoliosis in humans, the cause of idiopathic scoliosis remains a mystery in zebrafish and humans.

After acquiring hands-on experience and deeper scientific knowledge in the lab, I would like to attend a college that allows me to do undergraduate research in the fields of cell biology and genetics. My ultimate goal is to graduate with a PhD in cell biology and become a lab researcher to potentially find the cause to conditions and diseases that have similar characteristics to idiopathic scoliosis. My dream is to help unlock the code and find a cure for many childhood ailments.

Get answers to common scoliosis questions

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Finding Someone Who “Gets It”

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

The hardest part about having cancer as a young adult is finding someone who “gets it.” Someone who knows intimately what you are going through, someone who can relate to your struggles from their own personal experience. As much as I appreciate that my family and friends are there for me, and as much as they empathize with me, their level of support is limited to being on the sidelines, but not entirely knowing what I’m going through. Kara, one of CHOC’s child life specialists in the adolescent and young adult (AYA) treatment program, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need. Even though I had a great team of family and friends, plus everyone at CHOC who cheered me on, it was important for me to find someone who had been through the same diagnosis at the same time in their life.

When I was first diagnosed, my best friend’s mom put me in touch with a family friend of theirs, who is also college-aged and had Stage 2 Hodgkin’s. She was almost finished with her last round of chemo just as I was starting my chemo.  I cannot even express in words how helpful it has been having her there to answer questions for me and calm my fears about certain procedures or just the whole experience in general. One moment where I appreciated her support was right before one of my surgeries. I already had a PICC line (a peripherally inserted central catheter, used for long-term medications and for blood draws), but my doctors wanted to remove it and add a port. A port is a device they would insert under my skin and attach to a vein that allows medications, blood products, and nutrients to be given intravenously. I had some anxiety about the surgery and having to get poked often with the port, rather than just attaching an IV to my PICC. She reassured me that the port was more convenient and worth the extra procedure and that definitely helped me feel more comfortable going into surgery.

Although she lives across the country on the east coast, she was always only a text away for me. She was the first person I texted when I shaved my head―I needed to know how long it took to get used to the new look! And, like me, she was also treated in a pediatric hospital, so we shared a lot of the same experiences as a young adult being treated at a children’s hospital. Even now, when I’m close to being done with my own treatment and she’s a few months out from hers, seeing her back at school, healthy and back to normal, makes me so much more excited for when I get to return to school next semester.

The most important thing for me was to find people to connect with, and that’s something that I would suggest to any cancer patient. With social media being so prevalent nowadays, it is so easy to find other people out there who are going through the exact same thing you are. I joined a Facebook group of other people who have fought or are fighting Hodgkin’s, and it has been immensely helpful. Being able to unload concerns, fears, and frustrations onto a large community and have people respond with intimate understanding of your situation is very cathartic. There is a growing number of resources for young adult cancer patients that can be found online, such as Stupid Cancer, and being a part of these communities has given me a sense of belonging when I felt like I had no else to talk to.

Something that I’ve learned over the past six months is that attitude is equal to effort, and it has certainly made me feel better to make an effort to connect with others and find resources to help me through my treatment.

Learn more about AYA at CHOC

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The Five Stages of Dealing with a Cancer Diagnosis

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes Kids Health readers along on her look back at her journey with cancer.

bri-miller-dealing-with-a-cancer-diagnosis
Bri Miller, a 22-year-old CHOC Children’s patient, takes readers through the five stages of a cancer diagnosis.

Hi, my name is Brianna Miller, known to my friends and family as Bri! I am a 22-year old patient at the Hyundai Cancer Institute at CHOC Children’s, being treated for Hodgkin’s Lymphoma. A month before my 21st birthday, and just before my senior year of college, I was diagnosed with cancer. To say that learning I had cancer was a shock is an understatement. Throughout the last few months of treatment I’ve had a lot of time for contemplation and for trying to make sense of my emotions concerning my journey with cancer.

You’ve probably heard about the five stages of grief, which are typically applied to people experiencing the loss of a loved one, but I found these stages to be therapeutic in learning about and coping with my diagnosis. When you are diagnosed with cancer as a young adult, you are most likely experiencing one of the biggest losses of your life to date.

State 1: Denial

As a full-time college student working two jobs and being involved in a sorority, I was very busy and frankly not worried about much other than my grades, my friends and showing up to work on time. I had no symptoms other than swollen lymph nodes in my neck, and honestly, you don’t often hear about the young adult side of cancer all that much. It took four months of testing and multiple biopsies to assign a diagnosis, but I don’t think I ever really took seriously the possibility of cancer. Seeing as how I had no painful or otherwise debilitating symptoms, finding out what was wrong with my body was pushed to the back of my mind in favor of more present issues, such as my classes, work and social life. When I was finally diagnosed, my reaction was subdued because it almost felt as if I’d known in the back of my mind for a while and had been denying the reality because I didn’t want this disruption in my life.

Stage 2: Anger

Once the reality of my diagnosis set in, a sense of anger also set in. The hardest part about being diagnosed with cancer is that there is really no one to be angry at. The cause of Hodgkin’s is still unknown, so I couldn’t be mad at myself or at anything for causing it. I carried a lot of anger with me for quite a few weeks, and this anger hasn’t quite subsided. It rises to the surface occasionally when I am having a particularly bad day, when I receive bad news about scans, or sometimes just randomly when I am lying in bed trying to fall asleep. Quite often, this anger stems from the question of “why me?” Sometimes I think this anger could be relieved if there was a definitive cause of this cancer, so that it could take away the sense of unfairness that I feel.

Stage 3: Bargaining

The bargaining stage is associated with “If only…” statements and imagining how different things might be if only you personally had done something differently. I have reflected quite a few times on my lengthy process to diagnosis. Five months passed from when my enlarged lymph nodes first popped up to the beginning of my treatment, at which point the tumor in my chest had grown to 9.3 cm. At my halfway scans, there was unexpectedly still active cancer cells in my chest, resulting in more cycles of chemo being added to my treatment plan. I sometimes wonder if things would be different if I had been diagnosed earlier. If my tumor had been smaller at the beginning of treatment, would I have responded better to my chemo? If I had been diagnosed earlier, would I have been able to start treatment earlier and been able to return to school on time, rather than having to withdraw for a semester? Of course, there’s no point in lingering on these thoughts, but these are some unanswerable questions that I can’t help but think about occasionally, and I’m sure apply to many other cancer patients.

Stage 4: Sadness and depression

When addressing this stage, it is important to distinguish between sadness and depression. Depression is pervasive and interferes with everyday activities, and recovery can require professional help. Personally, I felt a deep, deep sadness but it never crossed the threshold into depression. It’s normal to be deeply sad about a cancer diagnosis, especially as a young adult. If I start to count the number of things that I will be missing out on during my six months of treatment, I’ll definitely run out of fingers and be broken down in tears by the end of it. For me, the hardest thing to cope with is that I had to move home to California for treatment, leaving my college time that was filled with a lot of family members, most all of my friends, and my sense of home. It’s hard not to be sad when your life and everything you know is 1,500 miles away, and just like that you’ve lost all sense of normalcy. Going through treatment for cancer doesn’t help either, as it’s hard to be cheerful while being nauseous, fatigued, and in pain from any number of side effects. The most that I can do is look for something positive in everything, and know that at the end of these six months this will all be a memory. Something that has really helped me during this time and while experiencing these feelings is keeping in touch with all of my friends, even while so far away. Knowing that they are all just a quick call or Facetime away has been so reassuring. Kara, one of CHOC’s child life specialists, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need.

Stage 5: Acceptance

Acceptance by no means is defined by letting go of or losing any of the normal emotions that come with a cancer diagnosis. Acceptance, for me, simply means that you have made peace with your diagnosis and are ready to put all your energy towards fighting the disease. There came a point where I realized that constantly being angry and sad was doing nothing but making me more upset. I realized that in order to beat cancer I was going to need to be strong and accept this as my new (temporary) normal. This doesn’t mean I no longer experience those feelings of sadness, anger, and confusion, but they have become temporary moments rather than a persistent mood.

Everyone’s journey with cancer is different. Even if you are diagnosed with the same type of cancer as someone you know, your emotions, questions and concerns may be completely different, and that’s ok. Having cancer is a deeply personal experience, but that doesn’t mean you have to fight it alone. Talk to your parents, siblings, friends, doctors and nurses― they are all there to help and support you in any way they can. No matter what emotions a cancer diagnosis brings you, don’t feel alone.

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

Read more from Bri:

  • Finding Someone Who “Gets It”
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...